While legislators were trying to figure out where and how to build a stadium for the Minnesota Vikings on Friday, I spent time with Charles Van Heuveln, a man born with cerebral palsy who cried as he talked about the very real possibility that he will lose his St. Paul condo in a few months because none of the 201 legislators he wrote to has responded to his plight.
It's a sad, ironic situation for Van Heuveln, who years ago worked to pass legislation to make public buildings, buses and polling places barrier-free.
For the past 18 years, Van Heuveln has worked as an educational assistant in the St. Paul Public School system, despite his disability. For the past 18 years, Van Heuveln has saved money and earned a pension, working under a good program called Medical Assistance for Employed Persons with a Disability (MA-EPD), which encourages disabled people to work and remain independent by allowing them to keep some of their earnings.
In May, however, Van Heuveln turns 65 and will retire. Despite the fact that the retirement age for most adults continues to be pushed back, the MA-EPD program ends at age 65. Because of his condition, Van Heuveln needs a personal-care assistant at night, which is not covered under Medicaid. He needs a breathing apparatus at night and can't operate it alone.
So in May, Van Heuveln will be forced onto Medical Assistance, which allows recipients only $677 a month in income, and forces them to spend down their savings to a maximum of $3,000.
In other words, a man who has worked diligently for nearly two decades to remain independent will be forced to become poor to continue his health care. He's likely to lose his condo and go into subsidized housing or a nursing home, which will ultimately cost the public much more than allowing him to keep his pension.
With great effort, Van Heuveln pushed a stack of papers across the kitchen table to me. One document showed his income and expenses. Even if he gets an exemption and is allowed to keep the maximum of $934 per month, he would fall $33.64 short of his fixed expenses every month.
"I'm not asking for anything, just to keep what I've earned for the last 18 years," Van Heuveln said, tears running down his cheek. "I'm very happy here. I would hate to lose it."
In the past sessions, legislators have failed to pass bills that would at least push the cutoff age back and allow disabled people to work longer and keep their money. Anne Henry of the Minnesota Disability Law Center said that budget concerns have derailed past attempts to extend the age limits. Compared with, say, a billion-dollar stadium, however, it's peanuts. The estimated cost in 2010 and 2011, Henry said, was $1.7 million. About 200 people "age out" each year.
"The impact on the relatively small number of people with disabilities is very harsh," Henry said. "We are requiring people with disabilities to impoverish themselves in order to get the health care they need. It's not good policy for people with disabilities and it's not good for the state's budget."
If Van Heuveln does spend down his savings and pension, he not only will qualify for subsidized housing or nursing care, but a host of other government programs such as food stamps and Metro Mobility, Henry said.
John Tschida, vice president of public affairs and research at the Courage Center, a rehabilitation center for people with disabilities, said that "it's kind of the idea that you are entitled to a good life to your 65th birthday, and then you are impoverished."
Henry said that to solve such problems, we should move back the retirement age to allow people with disabilities to continue to work, and exempt pensions from asset limits.
Van Heuveln showed me around his condo in his motorized wheelchair. He bought the condo in 2000 and had it remodeled to fit his needs.
"I don't want to retire, but I have no choice," said Van Heuveln. "I wrote to every legislator and the governor and I got one form letter back. They can try to find money for a new stadium, but not for people with disabilities."
In his letter, Van Heuveln issued a challenge to legislators and the governor: Give up your per diem and live on $677, or even $934 for a month, to show him how to do it.
"I've been independent all my life," he said. "I have worked hard and volunteered in the community. I don't want to live in a nursing home."
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