Long before she died from Alzheimer’s disease a few years back, my mother had an often hilarious habit of mixing her metaphors.

Faced with what looked to the rest of us like imminent disaster, for example, Mom would wave away our trepidation and say, “Don’t worry, dear. We’ll cross that cliff when we come to it.”

I thought of my mother last week as I spoke with Sally Soule, 47, of Kittery.

Soule, too, has a mother with Alzheimer’s — her name is Pat, she lives in an assisted-living facility in southern Maine and, because she’s in no position to decide if she wants her full name and address splashed across the newspaper, we’ll just leave it at that.

Soule also sees a crisis on the horizon: Thanks to a reported $120 million hole in the Maine Department of Health and Human Services’ current two-year budget, the MaineCare insurance coverage that keeps Pat safe and sound appears headed for an out-and-out free fall.

“I am freaking out,” said Soule in an interview last week. “I feel like I’m a pawn in (Gov. Paul) LePage’s political games.”

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It remains to be seen how much of the DHHS dilemma is politics and how much is a genuine fiscal collapse that, according to the LePage administration, has been building for the last decade.

But this much is certain: Under the supplemental budget unveiled by LePage last week, roughly half of the $120 million in cuts to DHHS in the 2013 fiscal year would be achieved by eliminating private nonmedical institutions, also known as PNMIs, from the state’s Maine-Care coverage.

That means 302 Mainers in residential substance abuse treatment centers could, as of July 1, have no place to live. Ditto for 696 children receiving behavioral health and other services, 608 adults with mental illness and 379 adults with cognitive and physical disabilities.

And last but by no means least, 4,291 elderly Mainers with Alzheimer’s, dementia or various other late-in-life maladies would, as the euphemism goes, have to make other arrangements.

People like 80-year-old Pat.

Soule moved her mother into the Alzheimer’s unit just after Soule’s father died in 2008. She remembers an estate attorney looking at what was left of her parents’ assets — around $200,000 at the time — and advising Soule to “hide the money” so her mother could go on MaineCare immediately and thus not burn through Soule’s inheritance.

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“But I didn’t really believe in that,” recalled Soule, who works as a project manager for the New Hampshire Department of Environmental Services. “I didn’t think I could sleep at night if I had done that.”

So she paid privately, to the tune of $8,000 per month, until the money ran out last year. Only then, with both the state’s and the facility’s blessing, did Soule enroll her mother in MaineCare.

At first she worried the switch might make Pat a “second-class citizen” within the Alzheimer’s unit. But the staff told her to relax.

“I’ll never forget this because it’s so poignant now,” Soule said. “They said to me, ‘She will always have a place to live with us here — even if she is on MaineCare.’

Pausing, Soule added, “Until about two days ago.”

“MaineCare can no longer be all things to all people,” countered Bonnie Smith, DHHS deputy director for programs, in an interview Friday. “We simply don’t have the money.”

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Few would dispute that. As Smith noted, the supplemental budget’s trimming of some 65,000 people from various MaineCare services still leaves upward of 290,000, or about one in five Mainers, enrolled in the program.

But the panic now seizing much of the MaineCare system — hundreds are expected to converge on the State House on Wednesday for the first in three days of hearings before the Legislature’s Appropriations Committee — is fueled by one yet-to-be answered question: Without MaineCare, what will happen to these people?

Mary Haynes-Rodgers, executive director of Shalom House in Portland, showed off her mental health facility Friday to a DHHS delegation that included Smith and Commissioner Mary Mayhew.

It was a cordial visit, Haynes-Rodgers said, but she felt compelled to ask more than once if DHHS had a plan for Shalom House’s 88 MaineCare clients (out of 218 total residents) in 12 group homes throughout Greater Portland.

And?

“They don’t have a plan,” replied Haynes-Rodgers, noting that the abrupt loss of PNMI funding may well lead to Shalom House’s total collapse.

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What’s more, noted Haynes-Rodgers, “With our clients, it’s not a matter of, ‘Will they live on their own?’ They can’t. So they will end up homeless. They will end up in jail. They will end up in the hospital. Or they will end up dead. And in my world, that’s not acceptable.”

Richard Erb, president and CEO of the Maine Health Care Association, said his organization represents 100 of the 135 PNMIs in Maine that serve the elderly. Of those 4,000-plus residents, the average age is 81 (45 percent are over 85), 70 percent are female, 89 percent have no spouse, and 46 percent suffer from Alzheimer’s disease or another form of dementia.

And 79 percent, Erb said, rely on MaineCare.

What happens to them if they’re simply erased from the MaineCare rolls?

“I don’t think that question has been answered yet,” Erb replied. “There’s a lot of shock coming from our member facilities — there is also the reaction that they can’t possibly do this. But I haven’t seen a real proposed solution yet.”

Neither has Sally Soule, Pat’s only child.

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Her mother, who worked for decades as a high school physical education teacher, is still ambulatory. But Pat doesn’t always know Soule is her daughter, sometimes mistakes the moon for the sun and occasionally tries to put her pants on over her head.

Soule, who will travel to Augusta for this week’s hearings, already has emailed every committee member with the warning, “You hold my family’s future in your hands.”

Should her mother be evicted from the Alzheimer’s unit, Soule wrote, “I will have to quit my job to care for her 24/7 (I am her only living relative). If I quit my job, I will be unable to pay my mortgage and could lose my house. If I lose my house, my mother and I will be homeless.”

So what are Soule and countless other worried families from Kittery to Fort Kent to do? Cross that bridge when they come to it?

“As we work with the Legislature,” advised DHHS’ Smith, “I think they should be paying attention to what’s happening. … What exactly it’s going to look like after they’re finished, we don’t know.”

Fair enough. But I’m starting to think my dearly departed mother was onto something.

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The faster this crisis approaches, the more it looks like a cliff.

Columnist Bill Nemitz can be contacted at 791-6323 or at:

bnemitz@mainetoday.com

 


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