Her left elbow resting on a foam pad on the tray of her wheelchair and her arm propped under her chin for support, the 48-year-old Medicaid patient forks an upside-down tuna cracker into her mouth. Occasionally an assistant holds up a bottle of Snapple fruit drink so she can sip it through a straw.
Staley's muscles have been steadily degenerating since before she was diagnosed with muscular dystrophy at the age of 13 months. In her early thirties she developed a related condition, sleep apnea, in which her brain shuts off the synapse that tells her lungs to breathe. A rack full of ventilators and suction devices designed to pump oxygen into her system or clear blocked passageways in circumstances when her biology fails on its own testifies to her frail physical condition.
Staley's modest ranch house on Greensboro's Parkwood Drive has seen a steady traffic of visitors today. The director of the company that provides her nursing home-care services has been by to interview her so advocates can convey her personal story to state legislators in Raleigh tomorrow. A photographer tinkers with his equipment in the open doorway of the bathroom. A TV news reporter will make an appearance later in the day.
Her house is always pretty busy, what with her need for round-the-clock medical care, but since the NC Senate sent up a budget in May that includes drastic reductions to Medicaid the number of visitors and phone calls has multiplied.
Staley, for one, is determined to see to it that the cuts are reversed. She is certain that if the Senate version of the budget becomes law she would be pushed into a nursing home and forced to relinquish her cherished independence.
Staley's personal care assistant, Sharon Pauling, dotes over her, one moment rushing into the living room to fetch the mail, and the next retrieving a portable phone and dialing a number for her. As Staley talks on the phone, Pauling dabs a napkin at the corner of the disabled woman's mouth to wipe away a stray bit of mayonnaise from lunch.
Her nurse, a jovial woman named Mary Lee Justison, stands in the doorway to the living room, where a TV set tuned to Fox News provides a running update on an armed freeway standoff in Los Angeles.
Then Staley calmly announces: “I need my trach cleared.”
Justison quickly grabs a battery-operated suctioning device, removes the cap from the plastic trach implanted in Staley's neck, and snakes about eight inches of thin catheter tubing through the opening. She activates the suction device, which starts up with a sharp gurgling sound familiar to anyone who's ever sat in a dentist chair and had saliva suctioned from her mouth. Then she removes the catheter, rinses the end, and repeats the procedure twice.
Staley smiles gamely, winces with a look of mild discomfort and waits. She's been battling a minor cold, so lately she's needed to be suctioned more often than usual.
Staley is something of a policy wonk when it comes to health care and, as a 1986 graduate of UNCG's masters-level creative writing program, she's pretty effective at communicating her knowledge to anybody who wants to talk to her about it. The trach gives her voice a slightly mechanical sound that is somewhat less resonant than a normal human voice.
Occasionally, she sounds fatigued but she's never anything less than fully engaged.
Every year, some form of Medicaid cut is proposed in the legislature, and she campaigns to preserve the program that keeps her alive. She views the cuts as misguided because she doesn't believe they would really rein in costs, at least not without drastically degrading her care.
“I go to the grocery stores; everybody at the CVS knows me,” she says. “I try to stay within the community as much as I can… Most people in nursing homes are older. The way nursing homes are set up it's really not an option for me. When I have a cold, I need to be suctioned every fifteen minutes. Every facility is stretched to the limit.”
Her nurse, Mary Lee Justison, believes the ability to maintain a modicum of personal independence is as important a part of keeping Staley alive as the clinical aspects of home care itself. Justison has cared for Staley for 16 years, ever since 1989 when a medical emergency forced her to give up her job teaching creative writing at GTCC and go on a ventilator.
“A person like her gets up in the morning and uses every single ounce of energy in her body,” Justison says of Staley. “If she went to a nursing home, I think she would just give up. Here, she goes out to eat, she goes to the grocery store, she pays all the bills.”
Members of the NC Senate point to the exploding costs of Medicaid as a justification of the cuts. Indeed the total cost of the North Carolina program — shared between the federal, state and county governments — has soared from $4.9 billion in 1999 to $8.3 billion in 2004.
Some senators point to a state Medicaid system more generous than those of surrounding states that entices patients to migrate into North Carolina to take advantage of superior services. Meanwhile, advocates speculate that recent textile plant closings in the past decade might have forced more people into poverty and onto the Medicaid rolls. Others note the rising cost of health insurance and the phenomenon of doctors recommending unnecessary medical procedures to protect themselves against malpractice lawsuits. It seems likely that there are many factors driving up costs.
Whatever the reasons for the cuts, Teresa Staley sees the Senate budget, if signed into law, as a precipice over which lies something dreadful and uncertain.
Three measures in particular seem designed to effectively push Medicaid patients from home care into institutions.
The budget calls for cutting personal care services — that is, nurses assigned to patients' homes — from 60 hours per month to 40 hours per month.
The budget would also reduce funding for private duty nursing — the service Staley receives through Greensboro's Bayada Nurses, a Medicaid contractor — to the equivalent of the cost of nursing home care.
The change defies logic, says Jim Edgerton, a lobbyist for the Association for Home & Hospice Care of North Carolina, because the typical cost for home care for a patient with severe medical needs like Staley is about $110,000 while the average cost of reimbursement for a Medicaid-funded nursing home bed is $35,000. The program covers fewer than 200 Medicaid recipients across the state, Staley among them, Edgerton says.
The projected savings simply couldn't be realized without endangering her life.
“We can't be one second away from her,” says Justison. “If she were in a nursing home, she couldn't wait five minutes for a nurse if she had an emergency. When her trach had to be suctioned she'd suffocate. I mean, how many times a day do you have to clear your throat? There's no real way for her to live except for home health care, and they want to take that away from her.”
The proposed budget also restricts Medicaid coverage for the aged, blind and disabled to those whose income falls at or below the benefit level for Supplemental Security Income — now set at $579 per month. Currently, anyone who falls below the poverty threshold — estimated by Edgerton at about $800 per month for individuals — qualifies for Medicaid. The Senate budget would push those who no longer qualify for the means-tested Medicaid onto Medicare, a federal program for the elderly and disabled with no income restrictions. The catch is that Medicare doesn't pay for home health care, so those patients pushed off Medicaid would be forced into nursing homes.
The NC Department of Health and Human Services estimates that under the Senate budget plan, 57,000 Medicaid patients would be transferred to Medicare, and an additional 8,000 Medicaid patients would be dropped altogether.
Tim Rogers, executive vice president of the Home & Hospice Care association, says Staley's medical condition is so severe that she requires at least 20 hours of care a day.
“It is expensive, but it's what keeps them alive,” he says. “She cannot find a nursing home that provides the same level of care.”
So far, Gov. Mike Easley and members of the House have given strong indications that they will restore the cuts before the final budget is approved.
“Many of the Medicaid cuts proposed by the Senate are extreme and unacceptable,” the governor said in a prepared statement on May 4. “I will work with the House and Senate to get a final budget that makes progress in education, protects our most vulnerable citizens, helps create jobs and maintains the state's fiscal discipline.”
Many House leaders also express a determination to undo the drastic reductions in the Senate budget.
“It's my top priority to restore the Medicaid cuts,” Rep. Verla Insko, a Democrat from Chapel Hill who is a chair of the Appropriations Subcommittee on Health and Human Services and a retired health administrator, told YES! Weekly on June 7. “I think it would be devastating to some people if we had to remove 57,000 people from Medicaid. The proposal we're hoping to get passed in the House to control the cost in that program would be by having closer monitoring of the program. We're not going to have a cap on hours. It would be more individualized.”
While closely monitoring the lower house as it drafts its budget this month, patients, caregivers and advocates point to what they see as a profit motive driving the Senate cuts, alongside the standard belt-tightening justifications.
“They're trying to downsize home health care and grow the nursing home industry,” Staley says.
Not only is health care an exploding cost in North Carolina and the rest of the United States; it's big business. The health-care industry is a major employer in many areas of the state. The top three employers in the Piedmont Triad region of the state are all health-care providers: Wake Forest University/Baptist Medical Center and Novant Health in Winston-Salem and Moses Cone Health System in Greensboro. In the 16-county Charlotte region, Carolinas Healthcare System is the second largest employer after banking giant Wachovia.
Even modest changes in state health-care policy can affect the livelihoods of North Carolinians employed in various sectors of the industry. Dozens of political action committees have registered with the state of North Carolina to ply the interests of every conceivable part of the industry in the halls of the legislature.
The fight over Medicaid pits nursing home operators against home health providers, both of which are fielding lobbying groups to defend jobs and profits.
The Association for Home & Hospice Care of North Carolina, which represents Bayada Nursing and other home-care providers, sees itself as outgunned by the more powerful NC Health Care Facilities Association, a lobbying group that claims to represent 90 percent of the state's nursing homes.
“We have been consistently outspent by the Health Care Facilities Association,” Tim Rogers says. “That organization has been able to wield more political clout. They're fighting for their homes and their bricks and mortar, and we're fighting for a 95-year-old woman that can't make it to Raleigh to lobby.”
The Health Care Facilities Association spent $85,000 on campaign contributions to candidates in state races in the election year of 2004. The nursing home lobbying outfit cut checks totaling $45,800 to dozens of candidates — members of both political parties, including both incumbents and challengers — in only one day in April 2004.
Candidates who received the maximum allowable contribution of $4,000 from the Health Care Facilities Association include Senate Speaker Pro Tem Marc Basnight, D-Manteo; House Speaker Jim Black. D-Charlotte; Gov. Mike Easley; Senator David Hoyle, a Gastonia Democrat who co-chairs the Finance Committee and sits on the Health Committee; and Senator Tony Rand, a Fayetteville Democrat who is a member of the Finance and Health committees.
The executive director of the Health Care Facilities Association did not return calls on June 8 seeking comment on the organization's lobbying efforts.
In comparison, the Home & Hospice Care association spent only $16,500 on campaign contributions in 2004, in all but a few cases cutting checks of $100 or $250 to candidates while its nursing home rival tended to pay out at least $1,000 or $2,000 to each candidate.
Yet the lines between altruism and profit are not so neatly drawn. Rogers acknowledges that the Home & Hospice Care association is out to represent more than just patients; there's an economic interest at stake too.
“Home care agencies are among the top five employers in some rural counties,” he says. “These are some low-income workers. This is a nurse aide-driven system. Some of these [employees] would qualify for Medicaid themselves. So there's a double effect.”
In Staley's case, since she requires nearly round-the-clock care, 16 different people depend on her for their livelihoods. Bayada Nurses, which provides nursing care to Staley, is an exception among the companies represented by the Home & Hospice Care association. With more than 8,000 registered nurses, licensed practicing nurses, home health aides and therapists, the New Jersey-based company does business in 15 states. Most of the companies contracted with Medicaid to provide home health care services around the state are much smaller, Rogers says.
Raleigh is about a two-hour drive, taking into consideration morning rush-hour traffic. Staley plans to meet with groups of retirees, advocates, nurses, and other disabled individuals for a briefing session at 9:30 the next morning before they spend the day talking to legislators.
She'll leave Greensboro at four in the afternoon and stay overnight at a hotel to be on time for the lobbying session the next morning. Three recent graduates of Guilford College, whom Staley employs as personal care assistants, will accompany her on their own time. Two of them, Matt Bostick and Noah Howard, play in the local rock band Tiger Bear Wolf. The third member of the trio of Guilford College graduates is Emily Zenah.
It's one of those oppressive 90-degree days when the humidity hangs in the air with a suffocating meanness. Without warning, around three in the afternoon, the skies open and loose a torrent of rain. Later, as the rain tapers off, the skies rumble with loud thunder.
“Oh, don't even,” Staley grouses.
The travel preparations require an elaborate menu of sequential steps. Bostick retrieves a dolly from the garage. He straps the ventilator rack to it with bungee cords and carts it to Staley's black Chevy Astro van, after Staley wheels herself to the pavilion in her side yard to get out of his way. Then Bostick and Howard strap the ventilator rack into the van so it won't come crashing down on Staley en route to Raleigh.
Aside from the ventilators and suction machines, she's packing special pillows, sheep skin to keep her from getting bedsores, her 'go bag' of medicines, and a bedpan, among other items.
Luckily, when it comes time to load the van the sun is out again, but the brief shower has cooled the air.
After one more suctioning, Staley moves her wheelchair onto the van's elevator ramp and positions herself in the center of the van. Bostick pulls the van out of the driveway after securing Staley's wheelchair. Howard and Zenah follow behind in a car.
The next morning, the lobby of the NC History Museum pulsates with a sea of red T-shirts worn by members of the American Association of Retired People from the organization's Greensboro and Rocky Mount chapters. Staley arrives a little late accompanied by Howard and another nurse, Carol Wilson, leaving Bostick and Zenah to find a parking space.
Soon after the museum auditorium fills, Rep. Debbie Clary, a Republican from Cherryville who is a member of the House Finance Committee, ascends the podium to reassure them that Medicaid is safe.
“You have a very friendly group of House [committee] chairs,” she tells them. “All six of your House chairs supported not making that cut.” But she cautions: “Things change down here like the wind. Now is the time for you to firm up and thank those House chairs and firm them up for the conference with the Senate.”
Later, Adam Searing, a health-care advocate for the NC Justice Center, takes the podium and tells the audience they should be in a fighting mood despite Clary's promises. He wears a pinstripe suit and a bow tie.
“Representative Clary was up here saying the House members have heard the call, but there's nothing in writing yet,” he says. “We've got to remind them that we've got a health-care crisis, not a Medicaid crisis. Don't take it out on the people who are least able to take care of themselves. Start working on the real problems.”
He's followed by Tim Rogers from the Home & Hospice Care association, who says: “Thank you, Reverend Searing. Between the two of us, we've got a Baptist convention. And that's good.”
Rogers is a clean-shaven, athletic-looking man who speaks in a musical but subtly moderated North Carolina accent. Like any good lobbyist, he remembers names well and seems to possess an outpouring of appreciation for anyone who engages him in conversation.
Standing behind the podium, he watches the back door to see if any other legislators will make it to the briefing. When it becomes apparent that they won't he decides to leave the audience with an inspirational message from Hubert Humphrey, the liberal champion of Minnesota who served as LBJ's vice president.
“The late, great Hubert Humphrey said, 'The great test of good government is when government takes care of those who are in the dawn of life, which is children, those who are in the twilight of life, which is the elderly, and those who are in the shadows of life, which is the disabled,'” he tells them.
Through the late morning and early afternoon, Staley and Wilson prowl the halls of Raleigh's two legislative buildings, delivering their message to any legislator or legislative aide they can find.
Staley's message is simple and unvarying. “I'm opposed to the Senate cuts to Medicaid,” she says. “I'm one of the people it would affect. It would push me into a nursing home, and that would not be appropriate for me.”
They start with Guilford County and radiate out to the surrounding counties. They meet Maggie Jeffus, Alma Adams and Pricey Harrison — all Greensboro Democrats thought to be stalwart Medicaid defenders. Among the dozens of others who hear her appeal are Larry Womble, a Democrat from Forsyth County; Bill McGee, a Republican from Forsyth County; Arlie Culp, a Republican from Randolph County.
When they reach the office of Earl Jones, another Greensboro Democrat, he smiles graciously and tells Staley that restoring Medicaid is one of his top priorities. He reaches down and extends his index finger in an attenuated handshake with Staley's clawed hand.
“You may want to talk to John Blust,” he advises. “He's one of those who's on the fence. Senator Hagan, she supports it.”
Staley and Wilson are well aware by now of Senator Kay Hagan's support for the cuts. Other legislators have already apprised them of the Greensboro Democrat's position. The two were not heartened by their visit with the senator.
“She said, 'Oh you speak so well with the trach,'” Staley recounts. “'Condescending' is the word that comes to mind.”
So they set out to find Rep. John Blust, a Greensboro Republican. Wheeling into the Legislative Building, Staley finds Blust talking excitedly into a mobile phone in the lobby. He wheels around and bolts into one of the building's courtyards before she has the chance to address him.
The two women pursue him toward his office. As they reach the hallway leading from the courtyard to his office, the legislator reemerges and tries to squeeze between Staley's wheelchair and a plastic garbage can.
“Excuse me,” he says.
“Representative Blust, I actually wanted to talk to you,” Staley says.
She gives her presentation and he nods as if half listening while his eyes dart nervously over her head at some indeterminate point in the courtyard. He admits he's not that familiar with the Medicaid provisions in the Senate budget.
“What's the amount of money that would have to be put back in the budget?” he asks.
Staley doesn't know the answer, and Wilson waves over Shannon McCarson, the Greensboro director of Bayada Nursing, and Searing, the advocate from the NC Justice Center.
“You could raise the cigarette tax,” Searing suggests.
Blust shakes his head as if dismissing the notion, and excuses himself.
“I'm going to ask my staff to find out how much it would cost to do what she wants to do,” he says in parting.
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