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Disabled and independent, but for how much longer?

  • Article by: JON TEVLIN
  • Star Tribune
  • February 18, 2012 - 11:49 PM

They clogged the hearing room with wheelchairs, and even though some of them have a hard time speaking, they made their point.

His body crumpled into a motorized chair because of cerebral palsy, Charles Van Heuveln leaned into the microphone and told his story.

"I work, I pay taxes, I have a mortgage and I am involved in my community," said Van Heuveln. "I don't want all the things in life that I value, especially my independence, to end because I am turning 65."

You may remember Van Heuveln from a column I wrote about a month ago. He has worked for St. Paul Public Schools for almost two decades, helping disabled students. He has saved money, bought a condo in West St. Paul and earned a pension.

Van Heuveln was working under a program called Medical Assistance for Employed Persons with a Disability (MA-EPD), which encourages disabled people to work and remain independent.

In May, however, Van Heuveln turns 65 and will have to retire and lose his health insurance. 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 his insurance. He needs a breathing apparatus at night and can't operate it alone.

So in May, Van Heuveln will be forced onto general 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 one month.

In other words, he will be forced to be poor. Ironically, that will likely cost society even more because he will then qualify for subsidized housing or a nursing home, food stamps and many other benefits. The money is not enough to pay his mortgage and fixed expenses.

The response to my last column on Van Heuveln was heartening. One family offered to pay the monthly $34 Van Heuveln is short on his fixed expenses (unfortunately, that would likely push him over the limit and could be taken away). Another man made a presentation to his synagogue, and members agreed to take up the issue by calling legislators.

Sens. John Marty, DFL-Roseville, and Kathy Sheran, DFL-Mankato, wrote to tell me they are hopeful to have enough votes to pass a law to help people like Van Heuveln in the Minnesota Senate.

On Thursday, disability advocates took the issue to the state House. Rep. Terry Morrow, DFL-St. Peter, and Michael Paymar, DFL-St. Paul, re-introduced a bill that would allow participants in the MA-EPD program to retain more of their assets put aside for retirement and also allow them to work past age 65. It would also call for a study to see how much the state would save by keeping participants off other government programs.

Van Heuveln's story "made us get our act together," said Morrow, who introduced the bill last year. The bill was one of the last victims of final budget cuts because legislators saw it as an expense, rather than in the context of savings from other programs.

Committee members seemed supportive Thursday -- well, apart from the three members who read e-mails on their cellphones while Van Heuveln tearfully talked about losing his job and home. But Health and Human Services Committee Chair Rep. Jim Abeler, R-Anoka, warned that the budget could be an issue again this year.

It's a sane and humane bill that will fix a massive hole in an otherwise good program, and it likely saves money. Not passing the bill would be foolish and cruel.

Rozanne Severance wanted to tell the committee what it's like to lose everything, but she was cut short and the meeting ended. So here's her story:

Severance was on MA-EPD, which allowed her to work at the University of Minnesota. Insurance through her employer covered most health needs, but she needed medical assistance, too, because she needs a personal care attendant.

When she turned 65, "I was given one month to spend my retirement savings or those funds would have gone to pay for health care, too," she said. "I used my retirement funds to buy items and supplies I would need in the coming months and years, knowing that I wouldn't have enough to live on."

Like all of us, Severance contributed to Social Security her whole working life. Now, she pays $1,876 of that back to Medical Assistance each month and gets just $677 per month to live on. She has been forced into subsidized housing and will likely lose her modified van soon because she can't afford insurance, license fees and gas.

"I've lost everything," said Severance. "I have nothing, absolutely nothing, left."

Severance left legislators copies of her speech. I hope they put their cellphones down long enough to read it and remedy this travesty.

jtevlin@startribune.com • 612-673-1702

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