Legally bound

Max Lewis is so backed up with work as a lawyer, he’s had to stop accepting new clients. But Lewis lives on less than $700 per month and relies on food stamps to buy groceries, living in a small studio apartment in Paquin Tower.

Practicing law challenges and satisfies Lewis, but it doesn’t pay his bills. He works on a strictly pro bono basis because his earnings must be no more than 85 percent of the federal poverty level to stay eligible for Medicaid.

Lewis is paralyzed from the neck down, with limited use of his arms. To prepare food, bathe, or get in or out of bed, he needs help from personal care assistants. Six hours of daily assistance costs Lewis nearly $17,000 per year. Health insurance companies don’t cover that expense or the cost of much of the medical treatment related to Lewis’ disability. Medicaid does. So Lewis finds himself in a paradox: Financially, his best bet is to live in poverty.

Eligibility for Missouri’s Medicaid program requires that a person earn less than $695 a month. Lewis makes a little less than that: $679 a month from Social Security Disability and Medicare benefits. His annual income is hardly more than $8,000. Divided between rent and groceries, the money goes quickly. Expenses, such as the annual $170 Missouri Bar fee Lewis paid in December, have a huge impact on his budget.

And because he can’t afford to pay more than the interest on his $43,000 in student loan debt, Lewis sinks further into debt each month.

“You have to be very tight,” he said. “I don’t know what’s the last time I’ve been to the movies.”

Lewis isn’t alone. As of the end of October, 2,499 of Boone County’s 15,888 Medicaid recipients were people with disabilities, according to the Missouri Department of Social Services. Any of those 2,499 who worked might face a financial problem similar to Lewis’ situation.

Medicaid, a welfare program funded jointly by the state and federal governments, pays health care costs for the poor, the elderly and those with disabilities. Medicaid reform was touted as a top priority at the end of the last legislative session by state legislators, whose current session began Jan. 3. Last year, the Missouri General Assembly passed a bill to eliminate Medicaid beginning June 30, 2008. Sponsors said the deadline was designed to force the state to examine restructuring the entire program.

Advocates of Missouri’s disabled community say the state’s Medicaid program traps people with disabilities in a state of poverty, creating an uphill battle toward attaining financial independence. “What the government is doing is forcing these people into poverty situations,” said Elizabeth Cully, program manager for Services for Independent Living. Under the oversight of Missouri’s Department of Health and Social Services, Services for Independent Living runs Medicaid’s personal assistant care service.

“The programs provide no incentive to work,” Cully said. “They simply haven’t faced the reality of the idea of independence for people who are well-educated — and also people who aren’t well-educated — who are willing to work.”

Cully said her clients rely on Medicaid because it’s their only option. Help from personal care attendants is the greatest expense for most of her clients, but many also need expensive medical treatments on a regular basis. Unlike most health insurance providers, Medicaid covers health care costs related to a client’s pre-existing conditions. If someone in Lewis’ position sought private health insurance, the premiums would be “totally prohibitive,” Cully said.

Sudden change

Lewis grew up with three brothers and two sisters, hunting squirrels, fishing and exploring the countryside near his hometown of Sedalia. His uncle owned a farm and about 2,000 acres near Syracuse. His grandmother lived in a farmhouse, where the family spent holidays.

“My dad was a country boy; my grandma lived in the country,” he said. “When I was young I often went to the creek, went swimming. I think it’s second nature for a lot of people in a smaller community, doing things in the countryside.”

He became the first member of his family to graduate from high school and attend college, earning a track scholarship from Northeast Missouri State University, which is now known as Truman State University. When he finished his freshman year in 1986, he took a summer job with a Pettis County Highway Department road crew. On June 12, 1986, Lewis’ two co-workers took a 30-minute break for lunch. But he’d left his lunch in another truck. “It was probably soda, a bologna-and-cheese sandwich and a cupcake or something,” Lewis said. “I figured I’d have to eat it in five minutes later on. It was a hot, humid day. The sun was out, the trees were green, and we were on an old bridge, metal with wood boards.”

Lewis climbed onto the bridge’s 4-foot-high outer railing and looked down. On one side of the creek he saw gravel; on the other side, muddy water. It looked deep, “six feet at the very least.” He threw a few rocks into the water to make sure. Jumping into a creek was something he’d done a hundred times before.

Lewis dove. The water was two feet deep. The impact with the creek’s muddy bottom broke five of his cervical vertebrae, the bones that allow flexible motion in the neck and help support the head. One of the bones sliced through his spinal cord, eliminating nearly all feeling and motion below his neck. Lewis remembers only bits of what happened next: feeling the stickiness of his bloody hair as his coworkers pulled him out of the creek, lying on a gurney that emergency medical technicians were hoisting up to the bridge, seeing a terrified look on the face of his friend Kent Raider while lying in Sedalia’s Bothwell Regional Health Center, and hearing that he would be flown by helicopter to Columbia’s University Hospital.

When Lewis awoke after 10 hours of surgery, a nurse said, “Max, you’ve been paralyzed and will never walk again.”

Although he knew something was wrong, Lewis doubted the prognosis at first.

“I thought if anyone could recover from this, it was me,” he said.

Darrin Young, a friend of Lewis’ since childhood, had the same reaction.

“I worked at Missouri Precision Metals in Sedalia,” Young said. “I got off at 4:15. The accident had happened around noon, and my mother had found out and was waiting outside my place of employment to tell me. We were 19 years old; we didn’t have a medical background or anything like that. I imagined I’d see Max a couple days later with a broken arm and a bandage around his head, smiling and laughing about it.”

Adjusting to a new life

In the following months, Lewis accepted his paralysis. And before long, life in a wheelchair was his new norm.

“I think almost anyone with a physical disability craves more mobility, but hopefully, within their mental stability, they understand their physical limitations,” Lewis said.

For about six months after his surgery, Lewis worked with occupational therapists at University Hospital’s Rusk Rehabilitation Center, learning how to teach attendants to bathe him, dress him and put him in his electronic wheelchair. He restored a little strength in his biceps. He uses his arms to drive the wheelchair, and with a pen clipped to his hand, he can type on a keyboard or dial a phone.

Nearly eight months after the accident, on Feb. 3, 1987, Lewis moved from his hospital room to the apartment in Paquin Tower where he still lives.

He enrolled at MU in the fall of 1987, majoring in secondary health education. Within six months at MU, Lewis said, he had adjusted psychologically and socially to his disability. He became more responsible and took better care of his body. He learned to go to bed at the same time every night, for example, because he needed an attendant’s help. Pulling all-nighters wasn’t as easy as it had been at Truman State.

After completing his undergraduate program, Lewis earned a master’s degree in health and wellness. And in 2003 he graduated from MU’s law school.

Lewis said his undergraduate and graduate studies were paid for by the state’s Division of Vocational Rehabilitation. But he paid for law school by taking out student loans, an investment he thought would pay off in the long run.

“I thought law school was an avenue for becoming financially independent,” he said.

Though Lewis has represented dozens of clients since he passed the Missouri Bar in 2004, his law practice hasn’t enabled him to pay off his loans or work his way off welfare programs.

According to the Missouri Bar’s 2005 economic survey, new lawyers in Boone County typically earn between $35,000 and $40,000 a year. That range might be higher now because the survey relied on data from 2004, said Linda Oligschlaeger, membership services director for the Missouri Bar Association. Lewis said the earnings indicated in the Missouri Bar’s survey wouldn’t cover his costs: $17,000 a year for personal care services, more than $5,000 a year for doctor visits and medical equipment, plus rent, groceries and other expenses.

“Let’s say I do attempt to get off Medicaid, and I get a job, and I’m rolling along,” he said. “Then I find out I can’t afford this. How long would it take to get back on that system, and how much further would I get in debt?”

Thus, Lewis works for no paycheck because he enjoys the work and helping people who can’t afford a lawyer.

Though he works in several areas, he prefers family law, saying it provides little opportunity for one person to sue another solely for advantage.

“Some people like caviar; some people like sardines,” he said. “Family law deals with down-home issues about life. It’s about people struggling through a very difficult time in their life and they want to move on.”

Working without the support of a law firm presents some special challenges. Lewis usually doesn’t have more experienced lawyers on hand to answer questions about procedural matters.

As in his work life, Lewis is independent socially and domestically.

He takes his electric wheelchair to go grocery shopping at Eastgate Foods. A program called Dragon types the words he speaks into a headset onto the screen, and helps him file court documents and prepare arguments. He volunteers as a gymnastics class teacher for children who have mental and physical disabilities. He dates, and he meets friends for drinks at the Heidelberg.

Lewis makes a point of getting together with a couple of close friends — Darrin Young and Tom May — on the 5th and 25th of each month. “We’ll go to the Heidelberg, watch a movie, get together and play Texas hold ’em,” Young said. Lewis also is active in politics. He meets politicians who come to Columbia, and takes trips to Jefferson City, hoping to influence policy changes that would allow him more financial independence.

But financial independence remains elusive. “Ticket-to-work” programs that allowed Medicaid recipients to work and remain eligible for health care coverage, for example, have been eliminated in Missouri. Les Wagner, the director of Boone County Family Resources, an agency that helps local Medicaid recipients take advantage of Medicaid programs, said the elimination of these programs has been frustrating for him and his staff.

“Every other state bordering Missouri, and many states throughout the country, have these buy-in provisions that allow people who have disabilities to have a job,” Wagner said. “When you have no buy-in provision, becoming employed means they lose the ability just to go to the bathroom, get dressed, and eat. This is a great hardship on persons in that situation.”

Lobbying for change

Sitting in his sixth-floor apartment on a night in December, Lewis waits for his personal care attendant to arrive and prepare his dinner. The TV is on; books and stacks of legal documents lie cluttered on a couch and two tables. Outside the window, Paquin Street stretches toward MU’s East Campus and cars fill College Avenue as people drive home from work.

Lewis’ financial future depends in part on what happens about 30 miles away in Jefferson City. But he’s confident government programs will eventually allow him to earn his living practicing law.

“My plan is to continue to lobby the Missouri government,” he said. “I really do believe it’s just a matter of time.”

Medicaid changes

Before it was cut in 2005, a program called Medical Assistance to Workers with Disabilities allowed people with disabilities who earned more than $695 per month to remain eligible for Medicaid. Columbia lawyer Max Lewis, whose health care costs related to his disability cause him to rely on Medicaid, hopes Missouri will establish “ticket-to-work” programs that would allow him and others to work toward financial independence.

State lawmakers tried to reinstate a smaller, less expensive version of MAWD last year. But legislators negotiating reforms of Medicaid as a whole, not just the MAWD program, couldn’t agree on a bill before the end of the legislative session. Here’s a recap of statehouse wrangling over MAWD:

• In 2005, Missouri Senate Bill 539 tightened Medicaid’s eligibility requirements and eliminated MAWD. Supporters of the cuts said MAWD had become too big for the state to afford. A 2001 fiscal note that outlined the cost to implement MAWD estimated the program would enroll 1,092 people by fiscal 2004 and cost about $6.6 million that year. In fiscal 2004, MAWD cost more than $203 million and had more than 14,000 people enrolled.
• Some state lawmakers say the human cost of cutting MAWD outweighed the financial burden incurred by the program. By the first months of 2006, legislators were trying to reinstate MAWD or create a similar program. The Missouri House approved a more restricted version of the MAWD program with a 152-2 vote in March 2005.
• State senators proposed a bill, which died in the House, that intended to toughen punishments for health care providers who commit Medicaid fraud. These senators added a fraud provision to the MAWD bill and sent it back to the House in the final hours of the legislative session.
• Efforts to call the legislature into a special session over the summer to pass a MAWD bill failed. State Rep. Jeff Harris, D-Columbia, got 66 signatures on a petition to hold a special session, far fewer than the three-fourths majority the petition needed. Gov. Matt Blunt declined to call a special session, saying there wasn’t enough consensus among legislators for the MAWD bill.

SOURCES: Blunt spokeswoman Jessica Robinson; Missouri House Communications Director Aaron Willard; Missouri Rep. Jeff Harris, D-Columbia; Kirsten Dunham of Paraquad, a St. Louis disability advocacy group