Disabling the Disabled

Richard Peyton is 29 years old. Like most young men, he has goals for his future. He wants to enter State Technical Institute at Memphis and study computer programming. He’d like to graduate, get a job and an apartment, forge a life for himself. But he can’t.

Peyton, a paraplegic, lived with his parents until they both died in 1995. Then he had to rely upon the state’s TennCare program for help with his day-to-day care. TennCare gave him one option: to live in a nursing home and submit to federal Medicaid requirements governing those facilities.

That means Peyton can’t leave the place more than 16 days out of the year — and in Medicaid terms, eight hours equals one day. He could take one, maybe two, college courses per semester, but since he can’t spend too many hours outside the nursing home, forget about study sessions at the library or computer lab. Forget about spontaneous plans to see a movie, visit a friend, hang out at a coffee shop. If he’s not back to the nursing home in time, that’s a free day he’s wasted.

And forget about having overnight visitors. Peyton, who has lived in four nursing homes over four years, got kicked out of his previous residence after a girlfriend spent the night.

“I guess you could say I’m the bad boy of the group,” Peyton says with a sheepish grin, glancing around at some of his friends at the Memphis Center for Independent Living, an advocacy center for the disabled.

Peyton’s situation is far from unique. Across Tennessee, thousands of disabled TennCare recipients, of all ages, live in nursing homes because they have no other choice.

Other states offer assisted-living services that let the disabled remain in their own homes, with visits by caregivers to help them with bathing, dressing, grooming, sometimes meal preparation, or housekeeping. Some provide medical care.

Though disabled TennCare recipients have a wide range of needs, the state, overwhelmingly, has just one solution: nursing homes. The state is 49th in the nation in its attention to assisted-living services, called “home health,” “home-base” or “custodial” care.

For individuals like Peyton and his friend Willie Robinson, 47, life in a nursing home isn’t much of a life at all.

Robinson was disabled in a 1971 car wreck, but that didn’t slow him down. He took classes at the University of Memphis, receiving his master’s degree in special education and rehabilitative counseling. He had a good job at Shelby State Community College as coordinator of disabled students’ services, a position he created. He had his own home and drove a specially equipped van.

But in 1996, Robinson had a muscle spasm while driving, crashing the van and breaking both hips and a leg. Complications from those injuries led to a stroke. Now he requires more extensive care than before. But the state won’t pay for home assistance, so Robinson is in a nursing home now.

“My living conditions are totally out of my control,” he says. “I have no control over what time I get up in the morning. I have no control over what I eat for breakfast, lunch, dinner. I have no control over what time I go to bed.”

Robinson had to abandon his job since Medicaid nursing-home regulations don’t allow him to work. Nor do they let patients maintain assets such as vehicles or houses.

“Even when I was a quadriplegic, I lived in my own home, I had my own job, I was able to take care of my business affairs,” he says. “After I had the stroke, I was pretty much unable to take care of my activities of daily living.”

He’d like to become independent again, but he can’t even get a motorized wheelchair and must depend on others to push him around.

His friend Melvin Douglas is in a similar situation. “I’ve been to three [nursing homes] in a decade, and I’m just regaining a lot of my self-confidence, my credibility, and other things,” says Douglas, 40.

That’s not easy, he emphasizes, “when you have all these things taken away from you, and you have to depend on nursing-home people for everything.

“All three of us are disabled persons who are trying to seek our independence,” says Douglas, who misses the little freedoms of life. “Some of the simplest things that you take for granted,” he says. “Sometimes people just want to go outside, get some fresh air or something, and the staff . . . won’t stop what they’re doing.”

All this could be changed along two different avenues on the state level. One, Tennessee could allocate more money for home-based care, but the trend has long been for legislators to pump available funds into the nursing-home system. Advocates blame politicians — in particular, Gov. Don Sundquist — who have received large campaign contributions from the nursing-home industry.

The second is TennCare itself. A lawsuit pending in U.S. District Court in Nashville charges that TennCare crafted its policy under pressure from its service providers, so they wouldn’t have to pay for home-based care. Advocates claim Tennessee is violating the federal Americans with Disabilities Act, which seeks “to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for [disabled] individuals.”

Peyton, Robinson, and Douglas say they speak for thousands of disabled Tennesseans who simply want the freedom to live outside an institution. “Nursing homes have their place for a person who may not be of sound mind and health,” Robinson says, “but not for persons like we three, who are of sound mind and health, who can make our own decisions — and the only thing we need is some helping hands.”

 

The Money Trail

Rep. John Arriola (D-Nashville) has been trying to persuade other legislators to steer money appropriated for long-term care out of the nursing homes and into home health services. “Absolutely, the nursing-home lobby has friends in high places,” he says. “That is affecting the ultimate decisions by our leadership.”

This year’s state budget originally allotted about $11 million for home-based care, and that would have generated nearly $20 million in matching Medicaid funds. At the time, advocates for the elderly and disabled grumbled it wasn’t enough — but it was, at least, a start.

But the money never came through. In final budget structuring, that allocation was cut. Nursing homes, however, quietly received the same $672 million they received last year, plus a 5 percent increase, for a total of $705.6 million, according to the state auditor’s office.

Tennessee does have a few assisted-living waiver programs, one of which serves about 400 people in Shelby County. Those programs received almost $8 million this year.

“There should be a sharing of the existing long-term-care dollars,” Arriola says. “If the nursing homes are going to get a raise every year, why shouldn’t that be shared with giving people the option to stay at home?” he asks. “The nursing homes got the dollars. We were just asking for $11 million, so essentially they picked up what we were trying to get, and then some.”

Many point to the powerful nursing-home lobby, which has been generous to the campaigns of key state legislators. In fact, the largest corporate contributor during Tennessee’s 1998 election cycle was the Murfreesboro-based nursing-home chain National Health Corporation, which gave more than $50,000 in campaign money.

Sundquist received $15,000 from that organization in 1997, campaign finance records show. The governor was also given $19,000 during 1996 and 1997 from the Tennessee Health Care Association PAC, a trade group representing 90 percent of Tennessee’s nursing homes. The two groups are among Sundquist’s top 20 contributors. Sundquist also received $20,000 in 1996 and 1997 from Parsons, Tennessee, nursing-home mogul James Ayers and his wife, Sharon. Until last year, Ayers was the dominating force behind American Health Centers Inc., which owns 33 Tennessee nursing homes.

The Commercial Appeal has reported that between 1993 and 1998, nursing-home interests gave Sundquist at least $117,750.

Sundquist’s spokeswoman, Alexia Levison, deflects accusations that Sundquist favors the nursing-home industry. “The governor has said in many instances, whenever he’s criticized about campaign money and who he feels obligated to, that campaign contributions never shape his policy,” Levison says.

“He thinks [home health care] is important, but he also thinks that form of care — nursing-home care — is important as well, and it’s just making choices. In a tight budget year, there are many tough decisions,” Levison says. “He doesn’t feel obligated to specific constituents or specific groups.”

Arriola believes otherwise. “The fact that he gets a lot of money from nursing homes — there are some assumptions that people are going to make when they look at that,” he says. “You look at one’s actions, and one’s actions speak louder than one’s words.”

But more and more people are becoming aware of the situation, he reports. “It’s just amazing, the support we’ve been gaining,” Arriola says. “You see the injustice in the state putting all its money into one pot. It’s going into one area, which are the nursing homes.”

 

Life in an Institution

The Americans with Disabilities Act requires that public entities provide “the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

If that were followed in Tennessee, says Melvin Douglas, he would have been making some personal progress in his thirties, trying to meet goals he’d set as a younger man — before the violent robbery in his late twenties that left him paralyzed from the neck down.

True, he is in a wheelchair now. But Douglas remains intact mentally and emotionally. He just needs some help getting dressed and groomed, preparing his meals.

Instead, Douglas had to spend long years isolated in a Shelby County-run nursing home, sporadically tended by assistants too busy — or unconcerned — to properly care for him.

Indignities abounded. “They put a diaper on me,” Douglas recalls. “I sat up in that diaper the entire day.”

The neglect grew worse. Once, when a nursing assistant was using a hydraulic lift to move Douglas, she went to answer a phone call and left him hanging in the lift. She returned to find him on the floor, his hip bone poking out of his left buttock.

“From that fall they had to amputate both legs,” says Douglas, who spent a year at the Med before transferring to another nursing home. Today he lives in a much better facility, but still considers himself a prisoner of circumstances.

“A nursing home is a nursing home,” Douglas says. “I will not be satisfied unless I get my own home.”

But that’s unlikely to happen, based on TennCare regulations as written now.

 

A Promising Beginning

In 1993, the federal government granted Tennessee a Medicaid demonstration waiver, letting the state replace the conventional Medicaid program with its new TennCare pilot program.

In a simple one-line description, the waiver maintained TennCare would offer home health services “as medically necessary.” The proposal was implemented in January 1994 for five years (and recently renewed for three).

So why does the state routinely reject thousands of disabled Tennesseans who apply for those services? In one word: greed.

That’s according to Gordon Bonnyman, a lawyer for Nashville’s Tennessee Justice Center, which filed a federal lawsuit in December against the state Department of Health and its then-commissioner, Nancy Menke.

The class-action suit asserts the department caved in to the demands of one of its service providers, Blue Cross/Blue Shield of Tennessee, rewriting TennCare’s policy to ensure that few people would qualify for home health services.

“The state has capitulated to Blue Cross in ways that are costly to the state,” Bonnyman says. “They have done that for fear that Blue Cross can’t be left unhappy. What Blue Cross wants, Blue Cross needs to get — or else.”

 

Why Nursing Homes?

The Chattanooga-based Blue Cross is the largest of TennCare’s nine managed-care organizations (MCOs), covering about half its beneficiaries. After losing money in the first two years of the TennCare program, Blue Cross steadily increased its earnings. Last year, the company made $24.7 million from TennCare, The Chattanooga Times Free Press reported.

TennCare pays each MCO a fixed amount per enrollee. If participants don’t need many services, the MCO profits. But it loses money on enrollees who require services exceeding the amount paid by the state.

That’s what makes home health care so unattractive to MCOs, Bonnyman says: it’s long-term. Most of the beneficiaries are not sick people who might recover. They’re disabled and will need ongoing services for the rest of their lives.

Enter the nursing-home industry. Nursing homes are excluded from TennCare’s contracts. They are paid directly by the state out of its Medicaid budget for long-term care.

Bonnyman’s suit claims Blue Cross and other MCOs routinely deny custodial services while steering participants into nursing homes, thus shifting the costs to Tennessee’s Medicaid nursing-home budget.

“It’s clear that the dollars saved by the MCOs, if there are any, are at the expense of the state, since we pay the nursing homes directly,” Bonnyman says. “This is an area where it’s clearly bad for everybody except the MCOs and the nursing homes.”

For “Level 1” care, the state pays nursing homes approximately $33,000 annually per patient. For more skilled “Level 2” care, Tennessee pays about $54,341 per patient. Home health care varies in cost, depending upon the patient’s needs, but in many cases it is indisputably cheaper than institutionalization.

A planning council from Sundquist’s administration hired a consultant earlier this year to estimate the costs of home health care. The consultant’s original $18,000-per-person figure was challenged by advocacy groups who called it overinflated. The estimated cost was then revised to $6,000 annually per person.

“Let people pay for their own room and board,” Bonnyman says, “and if they have family that they’re living with, they don’t even need the [maximum] level of social services.”

He believes Blue Cross threatened to quit the TennCare program unless Tennessee changed its policy on home health care. “The state should have said something to the effect of, ‘We feel your pain, but you’re making money, you’re doing okay, and you agreed when you signed this contract this was the service you would provide. So you need to quit your crying. Get over it,’” Bonnyman says.

 

A Question of Policy

The conflict began in earnest in April 1997, when Blue Cross asked the state if it could add more restrictions to TennCare’s home health services policy. The Health Department granted the request-without seeking or obtaining federal approval, Bonnyman’s lawsuit claims.

Bonnyman believes state officials were cowed by Blue Cross’ overwhelming presence in TennCare. “Obviously, TennCare could not exist in anything like its present form without Blue Cross participation,” he says, “and I think that’s what does a number on state officials, and intimidates them.”

The main sticking point was Blue Cross’ requirement that custodial-care recipients be “homebound.” “A patient is defined as homebound when he or she leaves the home infrequently, and only then for appointments that are medically necessary,” reads Blue Cross’ Utilization Review Physicians’ Manual. “The patient must be confined to the home because of medical infirmity.” That limits the people who do qualify for home health care as to patients with disabilities that can be corrected.

During contract negotiations in June 1998, the lawsuit says, Blue Cross demanded that TennCare change its regulations as soon as possible to conform to Blue Cross policies.

The Flyer obtained portions of the health department’s response, faxed by then-Commissioner Menke to Blue Cross CEO Tom Kinser, on June 30 and July 1, 1998.

“The State will prepare and move through the process as quickly as possible a rule change,” Menke wrote on June 30, “which would clearly define the Home Health Services [as] a covered benefit when prescribed by a physician or primary-care provider as medically necessary for a homebound individual.”

Menke defended the proposed change against public outcry, telling legislators that TennCare had never intended to cover long-term care. She explained that the homebound requirement had been TennCare’s policy all along, and the state was simply adjusting its rules to conform to long-time practice. “This is not a change in policy,” Menke told The Commercial Appeal at the time.

The rule change is pending and has not officially been put into place, a technicality the state has used to its legal advantage. In court papers, the state argues it does not unlawfully limit home health care because TennCare’s current policy does not contain the “homebound” requirement. The papers do not mention the proposed rule change.

Blue Cross’ overall net income rose from under $1.4 million in 1997 to nearly $29.2 million in 1998, according to The Chattanooga Times Free Press. A Blue Cross spokesman did not return calls from the Flyer.

Both sides claimed victory after a recent U.S. Supreme Court decision in a similar case, L.C. v. Olmstead. Last month, justices ruled that two mentally disabled women in Georgia could not be forced to live in a state psychiatric hospital after their doctors judged them eligible for home-based care.

Plaintiffs in both cases had sued their states based on the “integration mandate” of the Americans with Disabilities Act. The Supreme Court ruled that a state is responsible for home- and community-based care unless that would pose an undue burden. The office of Tennessee Attorney General John Knox Walkup is expected to argue such services would be a financial strain on Tennessee.

Bonnyman argues that the clause does not apply in Tennessee, since TennCare’s original policy had committed to the same level of services the state is trying to avoid providing now.

“It’s awkward for them to argue successfully that providing home health care through the managed-care organizations is a fundamental alteration,” he says, “when the plan they submitted to the federal government said they would do precisely that.”

Melvin Douglas says the ruling can’t come fast enough for him and other disabled Tennesseans. “We are people, and we want to live as fully as possible,” he says. “We’re not asking for charity. We’re just asking to be treated fairly.”

 

Update: The Story Today

Since Eileen Loh-Harrist’s story appeared in the Memphis Flyer last year, the plight of home-care patients covered under the TennCare system has largely receded from public awareness. The program, which helps insure poor people and low-wage workers who fall outside the net of private employer insurance, has many supporters as well as many detractors.

The issue of homecare has been eclipsed by a political assault on TennCare itself. In November, Federal Judge William J. Haynes, Jr. cleared the way for TennCare to drop 52,000 enrollees in order to cut costs and appease opponents of social spending who are agitating for “reform.” 27,000 are set to be dropped because of their inability to pay their premiums while 25,000 will be dropped for holding invalid addresses.

The vulnerability of TennCare is set against the backdrop of a volatile tax debate in the General Assembly last July. The Volunteer State has long resisted instituting an income tax, but legislators on both sides of the aisle were faced with just that in light of severe state budget shortfalls. In response, local talk radio jocks Phil Valentine and Steve Gill — with e-mailed encouragement from Sen. Marsha Blackburn, a representative of the affluent Nashville suburb of Franklin — mobilized throngs of anti-tax protesters who stormed the capital, breaking windows out of Gov. Don Sundquist’s office, and manhandling and verbally abusing legislators on July 12.

In the fallout of the broken glass and bruised feelings from the anti-tax riot, TennCare emerged as a prime sacrificial offering. Unless the program trims its rolls or new funds are allocated, TennCare is projected to overspend its budget by $37.5 million by June 2002.

Former Nashville mayor Phil Bredesen, a Democrat, has announced his candidacy in the 2002 governor’s race. Touting himself as a fiscal conservative, Bredesen pegged TennCare as a program that could be scaled back to allow Tennessee to avoid the income tax. A self-made multi-millionaire who started out in the healthcare industry, he is running under the slogan, “Manage, don’t tax.”

“Basically, what I did was take HMOs that were going under and put them back in shape,” Bredesen boasted to a living-room audience of elite political operatives during an October campaign swing through Memphis.

In this climate of hostility towards the uninsured, Gov. Sundquist has hastily joined the “reform” camp by proposing to eliminate 180,000 enrollees from TennCare, winning public approval from his erstwhile opponent in the Senate, Marsha Blackburn.

At least one section of the fifth estate has registered dissent. The Memphis Flyer’s editorial for October 18 reads as follows:

“We sympathize with a chief executive who has seen his tax-reform plans frustrated by mossback members of his own Republican Party and by opportunistic Democrats. But in this case the proposed solution, the gutting of TennCare, would not only be a bad end in itself, it is almost surely destined to fail as a concession to the professional government-bashers and ax-the-taxers, who in July conjured up a bona fide riot to sabotage tax reform — Better to see to our duty toward the uninsurables than to pander to this benighted lot.”

— Jordan Green