Medicaid loses out and the disabled take the hit.

Wayne Fry is a hardworking guy by any measure. He spent his life toiling as a union carpenter in St. Louis, and in 1985 he used those skills to build a spacious house just west of the city. He wanted a big yard for his three daughters, and the schools out there were better. The money he saved on labor kept the cost down, and today his is still the only two-story house in a modest neighborhood, where the Stars and Stripes fly from mailboxes and hound dogs lounge unleashed in front yards.

In 1995, Fry's father died and left him some inheritance. Fry went straight to the bank and paid off the house. That prudence turned out to be more crucial than he could have imagined. Just days later, he finished building an add-on room and went outside to take a dip in his new pool. It was dark, and he didn't know the water had been drained.

"I jumped in, hit my head, snapped it back," Fry recounts in a matter-of-fact tone. "And that was it, broke my neck."

Now Fry is quadriplegic, limited to about the same mobility Christopher Reeve had. Still, he's been living independently since the injury.

"Physically, I know how bad I'm hurt. Mentally, just because I can't talk as good, don't assume that means anything," Fry explains in his slurred speech. "I'm not going in a nursing home. I'll stay in my house. I built the son of a gun; I'll die in here with dignity."

But dignity doesn't come cheap in today's health care economy. Fry is divorced, and his children are adults with lives and troubles of their own. He needs twelve hours a day of help from home health aides--not to mention the twenty-five meds he takes daily, the advanced-technology wheelchair he uses, and the host of other support devices he counts on.

For ten years, Missouri's public health insurance paid the bill. A special state program even let Fry work part time without losing his benefits. So he clocked in at a local nonprofit, helping other people with disabilities. And he took classes in computer-assisted design, hoping to get a gig modeling accessible homes.

"I was pretty doggone good," he says.

But all of that's gone now.

In 2004, Missouri elected Republican Governor Matt Blunt--neophyte son of House Majority Whip Roy Blunt. The state is now a leader in the Bush Administration's movement to gut public health insurance.

Blunt stepped into a fiscal crisis sparked by massive 1990s tax cuts. His solution: Cut hundreds of millions of dollars from Medicaid, leaving 90,000 people without coverage, according to the Missouri Budget Project. He slashed the ceiling for a low-income parent to qualify for coverage down from 100 percent of the federal poverty level to just 22 percent--or from around $1,300 a month to around $300 a month. If you make more than that, you get no Medicaid. He created a premium for working families to pay in order to keep kids covered. And he got rid of the groundbreaking program that let disabled enrollees like Fry work without losing coverage.

Blunt also restructured a "spend-down" program that let seniors and people with disabilities who made more than $678 a month qualify. Previously, Fry and others like him could build up medical bills that, if paid, would drop their incomes to the qualifying level; the state would then kick in. Now, Fry has got to actually pay that money out of pocket. So, if you made $1,000 a month but had $322 in medical bills, you used to be covered under Medicaid and the state would pick up those bills. Not anymore.

"Missouri is being viewed as a national leader," Governor Blunt boasted in his 2006 State of the State address, "because of our commitment to innovative solutions for low income health care."

Because of such so-called solutions, Fry's not allowed to work. He pays a number of hospital, pharmaceutical, and wheelchair expenses out of pocket. And he has had to spend down his income by nearly $500 a month to keep coverage at all. His only income is a Social Security disability check of $1,175 a month.

Fry squirreled away savings in the months before Blunt's plan passed and was able to pay the spend-down for the first four months. But that money's gone now. His night aide tired of not getting paid a few months ago and quit. So his youngest daughter, a twenty-year-old student, has filled in. With school during the day, she's now not able to have a job, and bills are mounting. "I have student loans to pay," she sighs. "I buy my own groceries. I have my car to pay. It's a pain in the butt."

Created in 1965 as part of Lyndon Johnson's Great Society, Medicaid is structured so that the reds pay a share of each state's cost, no matter how high they get, and in exchange the states follow federal rules. After Bill Clinton's failed attempt at expanding access to health insurance broadly, his Administration encouraged states to apply for rule waivers that let them use Medicaid to chip away at the ranks of an estimated forty-six million uninsured Americans. The 1990s became an era of rapid Medicaid growth.

Then the recession came, and states around the country found themselves in positions similar to Missouri's--facing budget deficits and forced to choose between raising taxes and cutting either education or Medicaid, each of which routinely tops state budgets. Time and again, Medicaid has lost out--and so have its recipients. In fact, according to the Kaiser Family Foundation, in the past three years, forty-three states have made it more difficult to qualify for Medicaid and thirty-nine have cut benefits.

The Bush White House has prescribed a more permanent remedy: turn Medicaid into a block grant, in which the feds dole out one lump payment each year and leave the states to either make it work or cover the difference. In turn, states would get the free hand they've long asked for in designing their programs--and in finding savings.

As part of a massive and largely unexamined budget deal for the current fiscal year, Congress dramatically loosened the federal rules that govern Medicaid, most notably allowing states to shift costs to subscribers through higher co-pays and, for the first time, premiums. It also for the first time allowed states to provide different benefits to different people--based on income, for instance, or type of ailment, or even geography. These changes will cut spending by an estimated $43 billion over the next ten years, according to the Congressional Budget Office.

States are already taking advantage of these new rules. Kentucky has cut back on prescription drug coverage and on speech therapy and physical therapy. West Virginia is reducing benefits for Medicaid recipients who refuse to sign a contract that says they won't miss doctors' appointments or go to the emergency room unnecessarily.

Bush has proposed additional cuts of $35 billion in the coming decade. "What that will do," says Rachel Klein of Families USA, "is put fiscal pressure on the states that will then lead them to take advantage of the changes in [the budget deal]."

And that will mean more states will have citizens like Fry.

Mississippi Republican Governor Haley Barbour hammered out a plan to use a federal rule waiver to trim an estimated 50,000 seniors and people with disabilities from the rolls. (In Mississippi, 25 percent of the state's residents are on Medicaid.) Most were people who were enrolled in both Medicaid and Medicare, and thus were primarily using Medicaid for drugs. The logic was that the new Medicare drug benefit would pick them up in January 2006.

Advocates promptly sued. Facing an uphill legal battle and taking a political beating, lawmakers changed course. They reinstated the 50,000 people, and instead slashed the drug benefit for everybody--allowing only five prescriptions per month, with no more than two brand names.

So advocates gathered up eight subscribers and filed a second suit. Plaintiffs include people like Bruce and Rita Tubbs, who live on a combined $926 a month. Bruce has diabetes, epilepsy, and asthma, among other ailments that add up to nine meds a month. Rita is developmentally disabled and also faces a long list of conditions that require seven meds a month. They pay for what they can--and do without the rest. Skipping dosages has upped Bruce's use of an oxygen mask from just nights to three times a day, he says.

By April, Bruce and Rita Tubbs and others in the state had gone nine months without full coverage.

A mid all the cuts and the hardship, one positive thing has occurred in both Mississippi and Missouri: the birth of a new grassroots movement in low-income neighborhoods.

In Missouri, there have been a lot of protests. And local groups are circulating a petition to place a measure on the ballot in November to reverse Blunt's Medicaid cuts. Given the costs of a successful statewide ballot initiative, the shoestring campaign is a long shot. But organizer Robin Acree is not discouraged.

"We used the health care as a tool to engage the folks in this bigger picture," says Acree, who herself raised three kids and went to school while making ends meet with public assistance.

Part of the bigger picture is voter registration. Another is low-income housing. Acree says that people who have become involved in the Medicaid issue are seeing the connections to other ones. She feels the momentum building.

"People think we're crazy," she says, but "our goal is to look for universal health care."

For Wayne Fry, though, it would be enough just to get his coverage restored.

In the course of the Mississippi drug fight, the state's first AIDS advocacy group sprang into action. (There, 70 percent of the state's AIDS cases are among African Americans.) The advocacy group won an exemption from the drug cap for AIDS patients, whose treatments simply cannot be kept to two brand name meds.

Other Medicaid recipients in Mississippi began agitating. Last summer, Dorothy Bishop, who is wheelchair bound, protested in front of the state capitol in her daybed. Bishop also joined a protest in Jackson late last fall in front of the governor's mansion. The protest was organized by Mississippi's Coalition for Citizens with Disabilities.

"This policy is going to force many Medicaid recipients into hospitals and nursing homes, the only places they can get all the drugs they need," said Mary Troupe, executive director of the group. "That will cost the state far more than if these patients had had adequate treatment in the first place."

And it may cost lives, as well, Fry warns, if people are forced into nursing homes.

"I've lived alone for ten years," he says. "If I didn't, I'd be dead by now."

He has no intention of giving up.

"If you don't fight for your own self," he says, "don't count on anyone else to do it."

Illustration by Craig LaRotonda

Kai Wright is a writer in Brooklyn, New York, and editor of BlackAIDS.org. You can read more of his work at KaiWright.com. This story was produced under the George Washington Williams Fellowship, a program sponsored by the Independent Press Association.