The future of Medicaid hangs in the balance as Election Day approaches, but John Wren feels like no one's listening to the people whose lives depend on the health program for the poor.
Wren, 45, of Erie, Pa., was among dozens of people with disabilities, their caregivers, families, activists and volunteers who laid siege this week to Pennsylvania's capital city, Harrisburg, during protests organized by ADAPT, a national organization that advocates for disability rights.
President Barack Obama and Republican presidential nominee Mitt Romney have vastly different visions for the future of Medicaid and people like Wren and his fellow protestors understand the stakes all too well.
While Obama seeks to expand Medicaid to cover millions more, Romney would move in the opposite direction by slashing federal spending and turning over control of the program to states.
But Wren doesn't think that either Obama or Romney is tuned into the needs of people with disabilities. "Those two guys aren't going to be the ones who do anything about us," Wren said Tuesday during a protest outside the Pennsylvania Department of Public Welfare.
Until four years ago, Wren was earning about $60,000 a year as a truck driver. He's a father of six who liked to hunt, fish, and camp and was about to marry his fiancée, Terri Martin. First, he got laid off. Then, an automobile accident robbed him of the future he planned, along with his right leg and right eye.
Today, Wren is unemployed, uses a power wheelchair to get around and requires care at home and medical supplies paid for by Medicaid. Wren's still with Martin, but they never got married. She has taken on the role of his home aide and the state won't pay spouses to care for each other.
Medicaid coverage of his home care services is what's keeping him from spending his life in a nursing home, and he's worried that with less money to go around, people like him will be left behind, he said. So Wren decided it was time to take a stand in his home state. "This is a focal point of what's going on," he said.
Over four days in Harrisburg, protesters used their wheelchairs, scooters and legs to march on the governor's mansion, occupy the state Capitol, storm the welfare department headquarters and take over a downtown plaza outside a Romney campaign office. They almost crossed paths with Ann Romney, the GOP candidate's wife, who headlined a fundraiser Monday night at the Hilton hotel that served as a temporary home for many activists, said Amber Smock, an ADAPT spokeswoman.
ADAPT activists fear Romney's plan would cut them adrift from a program that safeguards their independence. Protesters chanted slogans like, "My Medicaid matters" and the Occupy Wall Street standard, "This is what democracy looks like."
Even under the current Medicaid system, states suffering budget crises have made cuts. In Pennsylvania, the administration of Gov. Tom Corbett (R) reduced dental coverage and removed about 130,000 people from Medicaid, although many regained benefits. Pennsylvania also eliminated health coverage for more than 40,000 poor adults under a separate program.
Activists also are upset about Corbett not taking advantage of a health care reform program that would finance more home care services, and about delayed payments to home aides this summer that threatened care. Wren and Martin were especially harmed because they rely on the money she gets paid to care for him.
The Romney plan would give governors like Corbett unprecedented leeway to reduce coverage and benefits under Medicaid while dramatically reducing federal spending.
Romney wants to convert the entitlement program into "block grants," or lump sums of money states could spend with less federal oversight. As many as 44 million people could lose benefits under a "block grants" proposal authored by Romney's running mate, Rep. Paul Ryan (Wis.), that would slash federal Medicaid spending by $810 billion over a decade, according to the Urban Institute.
"The right approach is one which relies on the brilliance of our people and states, not the federal government," Romney said during a debate with Obama on Oct. 3.
By contrast, Obama would preserve the current program and extend coverage to 11 million uninsured adults via the health care reform law, which Romney vows to repeal. During their first debate, Obama warned that Romney's plan would put vulnerable people in jeopardy. "This means a 30 percent cut in the primary program we [use for] help for seniors who are in nursing homes, for kids who are with disabilities," Obama said.
When Bob Kafka of Austin, Texas, a national organizer with ADAPT, hears talk like that, he can't help but notice it doesn't include adults with disabilities. Kafka, 66, has a spinal cord injury and uses a wheelchair. He's covered by Medicare but advocates for Medicaid policies that enable people to stay out of nursing homes.
Kafka believes that transforming Medicaid into a block grant program will inevitably lead to cuts in benefits because states won't make up for the lost money. "They just won't use the dollars and will gut services to people," he said, especially in places like his home state of Texas, which already has a small Medicaid program. When competing interests squabble, he said, "those in power benefit."
Even if a block grant plan isn't enacted, states will continue to look for ways to cut Medicaid, Kafka said. That will leave people with disabilities fighting for a slice of a shrinking pie and it will pit them against against other people in need. "We don't want to fight amongst ourselves," he said during a rally at the Pennsylvania state Capitol in Harrisburg Wednesday.
Giving states more "flexibility," as block grant proponents espouse, is a good idea in theory, said Ian Engle, the executive director for the Center for People with Disabilities in Boulder, Colo. Indeed, people with disabilities want states to experiment with covering more services for independent living as opposed to nursing home care, he said at the rally Wednesday.
But Engle, 39, who uses a wheelchair and has private health insurance, knows that's not what "flexibility" will really mean: "If you do these block grants, you're cutting the services."