Income limits restrict services for Pennsylvania's disabled students
Elaine Houston and Jonathan Duvall in the lab with Ms. Houston's wheelchair project at the University of Pittsburgh. Mr. Duvall is working on his master's degree in rehabilitation engineer-ing and wants to pursue a doctorate. Ms. Houston is working on a doctorate in the field.
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Jonathan Duvall remembers the noise the most: the loud, definitive crack, like the sound of a tree branch snapping in two.
It was about 9 p.m. on Feb. 13, 2007, in the middle of an ice storm. Jonathan and a group of his University of Pittsburgh fraternity brothers were sledding outside the Petersen Events Center, armed with snowboards and knit sweaters from a late-night Kmart spree. It was the last run of the night, and most of the students were already heading back.
That's when he heard the crack -- followed by a scream, his own. "I hit a bump on my last ride down and landed on my head," Mr. Duvall said. "When I heard the crack and couldn't move, I knew what had happened."
Diagnosed with a spinal cord injury and paralyzed from the waist down, Mr. Duvall, then 21, left school to recover at his sister's single-floor home in Ohio. A mechanical engineering major who had wanted to work with cars, he gave little thought to his studies during his recovery. Once, during physical therapy, his doctor asked if he had heard of rehabilitation engineering, the design and evaluation of technologies for those with disabilities. Mr. Duvall hadn't.
"He told me I should look into it, that it might be a good fit," said Mr. Duvall, now 26, who just finished his first year studying the subject in graduate school at the University of Pittsburgh. But whether it's a good fit soon may not be up to him.
To fund independent research in their field, graduate students like Mr. Duvall usually apply for paid fellowships from places like the National Science Foundation. Mr. Duvall hopes to apply for the NSF's flagship program, the Integrative Graduate Education and Research Traineeship, which offers recipients a yearly stipend of $30,000 for two years.
But if he receives that fellowship, he will no longer be eligible for his attendant care waiver, administered by the Centers for Medicare and Medicaid Services, available only to those who earn less than roughly $25,000 a year. Mr. Duvall would lose the nurse who helps him shower, cook, clean and carry out other basic tasks. It's a Catch-22, he said: Take the fellowship and lose the daily help, or keep the attendant care and stagnate his career.
"It's not really a choice at all," he said. "I can't get rid of my attendant care. I have a spinal cord injury, so I wouldn't even be able to get out of bed and into my wheelchair in the morning. I wouldn't be able to live."
Had Mr. Duvall been a student a few years ago, he might not have faced this choice. In 1987, Pennsylvania instituted a statewide disability benefits program, called Act 150, to complement the waiver and eliminate the income ceiling for care. But because of state and federal budget cuts in recent years, this program is effectively frozen.
In the 2010-11 fiscal year, Act 150 received roughly $212 million. This fiscal year, funding was down to $177 million. The Pennsylvania Department of Public Welfare projects that next year's budget will decrease even more, to $162 million.
The result of these cuts is an ever-growing wait list, Welfare Department spokeswoman Anne Bale said. It is unlikely, she said, that any of the 217 people on the list will come off of it and be eligible for income-independent care. Mr. Duvall said he was once told that the wait list would not move until one of the 2,292 people currently receiving care died -- and even then he'd be nowhere near the top.
"The wait time is indefinite," Ms. Bale said. "We're not taking anyone off services, so it would be very difficult to get on. It's basic economics: The demand for these programs is growing, but we have less money to pay for them. The wait list is the resulting reality."
Allen Kukovich, the former Pennsylvania state senator who introduced the bill, said he came up with the idea for the law after he was approached by disability advocates in the late 1970s. They lobbied hard for the bill, he said, raising awareness and lining up votes. In turn, he was an ardent supporter of their cause, convinced that he had a moral responsibility to advocate for people with disabilities.
Funding was an issue even back then, he said. He knew he would not get enough votes to pass the bill if he asked for a lot of money upfront, so instead he took a risk.
"My strategy at the time was to just try to get the bill in place so that we could have a rationale to go after adequate funding in future years," he said. "When the economy was good and state revenues were good, we were able to keep people off the waiting list, but when money was tight, all human services programs were historically hurt."
Sometimes, he said, waiting lists increase political pressure for reform, encouraging legislators to allocate more funds to welfare services. But now, he said, legislators are not often making welfare services their top priority.
The freezing of Act 150 highlights a larger problem with disability benefits programs nationwide, said Carol Glazer, president of the National Organization on Disability. Such programs are created to help those who don't work, too often neglecting those who do.
"If you do work and make over a certain, barely-above-poverty-level salary limit, you stand to lose all of your cash and health care benefits," she said. "If you are looking at jobs that don't pay very high wages, you are actually worse off working than you are by not working and collecting benefits. The system offers a severe disincentive to work."
Among her colleagues, the problem is known as the "cash cliff." The edge of the cliff represents the income ceiling for benefits. For Ms. Glazer, the cash cliff is personal as well as professional: Her son, age 20, was born with hydrocephalus, a buildup of fluid in the skull that caused swelling in his brain and left him dependent on disability benefits. She worries that he may soon have to make the choice Mr. Duvall faces now.
Social Security Disability Insurance was established in 1956, when most disabled people were not expected to be able to work at all. Ms. Glazer calls this the "tyranny of low expectation." Such benefits help those who actually lack the mental or physical capacity to work, but she argues that disability insurance should stop punishing those who don't.
Rory Cooper, chair of Pitt's Department of Rehabilitation Science and Technology, said graduate students like Mr. Duvall, who are competitive for national fellowships, are those most likely to acquire a well-paying job, pay taxes and give back to their communities. Mr. Duvall wants to design more ergonomic wheelchairs and be involved in policymaking to help the disabled. With the unemployment rate for people with disabilities roughly double the regular unemployment rate, Mr. Cooper added, these students need all the help they can get.
"There are a lot of social and employment barriers for people with disabilities, and even at Jonathan's level, there is no guarantee of employment," he said. "But if your resume says you received a fellowship from the National Science Foundation or the National Institutes of Health, that says you were one of the best students in America, regardless of disability.
"There are no guarantees in this world," he continued, looking down at his own wheelchair. "We know that more than most. But a stamp of approval like this is about as close as you can get."
As he spoke, he motioned to Mr. Duvall and another one of his students, Elaine Houston, 24, a doctoral student in the department. Ms. Houston, who was born with a variety of genetic orthopedic impairments and uses a wheelchair, hopes to apply for a fellowship to create more efficient, more interactive robotic wheelchairs.
She, too, will face a choice between the fellowship and attendant care. But for now, she says she knows what she'll choose. "I want to give people the ability to interact independently with their environment," she said. "I'm focusing on the person in the chair."
The continuing decreases in funding for the state Welfare Department make it unlikely the situation will change any time soon.
Lucy Spruill, the director of public policy at United Cerebral Palsy of Pittsburgh, said her organization was allowed to serve only two people off of the Act 150 wait list in the past year. One was removed only a few days before he died, she said, the other is 56 years old and critically ill.
"It's like going to a food bank when you've run out of food," she said. "You don't have food and you don't have a paycheck and you need to feed your family today. Instead of being given food, you're told that they'll call you when food becomes available for you. 'When will that be?' you ask. I don't know."
She paused for a moment. Then, she began to hum under her breath. It was an old ditty from 1949, "The MTA Song," originally recorded as a campaign song for Progressive Party mayoral candidate Walter A. O'Brien. The lyrics tell of a man trapped on Boston's subway system.
"Did he ever return? / No, he never returned / And his fate is still unlearn'd," she sang. "He may ride forever / 'neath the streets of Boston / He's the man who never returned."
First Published June 24, 2012 12:00 am