Suffering from acute Peripheral Degenerative Vascular Disease, White had already lost part of his right foot and was about to lose both legs.
“At that point, I still had both legs, just half the foot was gone,” White said.
  
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“Before all of this started, I was on Medicaid,” White said. “I was driving a school bus and had been doing that for almost 10 years. I worked more than eight hours a day and still qualified for Medicaid and food stamps. I was always embarrassed about being on those programs.”
So, when he again began having circulation problems with his legs, White became worried about how he was going to receive medical care without his Medicaid benefits.
“It was about a month later that I started losing blood to my leg,” he said. “I had to sleep with my leg hanging over the bed to get blood back down there.”
Out of desperation, White called the doctor who had been treating him and said, “I’m going to end up having to go into an emergency room. Which hospital would you recommend? And he said, ‘You just come into my office and let me see you.’”
That was just before Memorial Day weekend, and upon examining White the doctor said, “What are you doing over the weekend?” White recalled. “I told him I had no plans, so I went in for surgery.”
The doctor agreed to take on White’s surgeries as a charity case, but with his Medicaid canceled, the hospital won a $36,000 judgment against him.
Now, thanks to the help of Anchorage attorney Kenneth Kirk, White said he’s back on Medicaid, but still has many unanswered questions about why he had to be without coverage at all when his legs were amputated.
In cases like White’s, another option to keep his Medicaid coverage was available — an option he didn’t learn about until he was in the hospital recovering from amputation surgery. If a court-approved trust is put in place, called a Miller trust, a portion of White’s disability payment can be placed into the trust designated for specific medical-related expenses, he said.
“I still get the exact same amount of money, they just redefine what they call income,” White said. “I can’t use the money in the trust for household expenses, and frankly, it’s hard to find out what I can use it for.”
The main reason for the trust in White’s case, which requires court approval, was to reinstate his Medicaid. What White calls the most frustrating part of his medical ordeal is that had the state’s Medicaid system informed him about the trust before canceling his insurance, he would have never been without coverage and now on the hook for tens of thousands of dollars in medical bills he cannot pay.
“I can’t believe when they set up all these programs that they set them up with the idea that what happened to me would happen, that they would have to give up everything,” White said.
So, after losing his legs, White and his family are living a financial nightmare, he said. Before his health problems, he had no credit card debt, owned the trailer home he lives in and the five acres of land off Knik-Goose Bay Road. Now he fields calls from creditors seeking payment for his hospital expenses and will likely lose ownership of both his home and land.
“I was doing things right,” he said. “I had no credit card debt, I have property that’s paid for, I have a mobile home on it that’s paid for. I didn’t have any debt at all. I was living within my means.”
Although it may be too late to do anything about his situation, White is an advocate for changing the system to be more open about the options available to people who have a legitimate need for Medicaid.
A search of information available to Medicaid recipients on the state’s Web site found no mention of Miller trusts and how a trust could be used to maintain or qualify for Medicaid benefits. A search of the “Medicaid Recipient Handbook” shows no mention of Miller trusts, and the only mention on the state’s Web site about trusts is a one-line reference in a document used for internal staff education. In the document, titled “Care Coordination Training Segment P: Public Assistance,” an entry says that if a Medicaid recipient’s earnings are over the limit, “an Income Qualifying or Special Needs trust may be utilized.”
While Medicaid case workers generally know about Miller trusts, they may not always suggest a trust as an option if the need for one isn’t apparent, said Jim Steele, a policy specialist for the state’s Medicaid program.
“Our staff do know about that, but I’d guess I’d have to say people aren’t always told off the bat about the Miller trust,” Steele said. “A lot of times, people will come in and apply (for Medicaid) and it’s not immediately obvious there may be a need for a trust.”
Steele said he couldn’t speak specifically about White’s case, but said that in general, if a trust is seen as a viable option for Medicaid patients, case workers will refer them to legal representation to help set up a trust.
After hearing about White’s situation, Steele admitted he could see where had his caseworker known there could be long-term expensive care needed, “At that point, the division could’ve referred him.”
“People don’t normally need a Miller trust unless they have really high medical needs,” Steele said. “The staff that handle our long-term care cases are probably the ones most familiar with the trust system. ... For the run-of-the-mill Medicaid case, a Miller trust is probably not the right place to go.”
White says he’s learned about the Medicaid system the hard way and hopes others don’t have to sacrifice like his family has. Although he’s back on Medicaid, that came with the additional price of dropping his diabetic wife. Now, the family has to find a way to pay for her medical treatment and needs out-of-pocket.
“I learned the hard way they can drop you at the snap of a finger, but to get you back onto the program it takes a month and a half,” White said of the state’s Medicaid system. In his case, that month and a half were the most medically crucial of his life. “Once back on, I thought they’d go back and take care of those bills. Nope. Once they send you a notice they’re not going to pay the bills, they give you 30 days to appeal.”
At the time when White should have filed his appeal, “I was having surgery after surgery after surgery and on medication all the time,” he said. “I don’t even recall getting such a notice.”
Despite adjusting to life without legs and answering to creditors, White maintains a chipper attitude and is quick to laugh.
“I’ve tried not to let this whole thing have too much of an affect on things,” he said. “For a long time, there wasn’t anything I could do about it. I do things to keep my attitude up, but I am upset, but I don’t allow myself to spend time thinking too much about my situation. I think the only solution is a political solution.”
White said he doesn’t feel sorry for himself and doesn’t want sympathy from others. “You’re only a cripple if you think you are, and I just don’t see myself that way. I can do everything I did before, except for going jogging.”
Editor’s note: This is the second of a two-part series examining the life of Jim White, who lost both legs to Peripheral Degenerative Vascular Disease.
Contact Greg Johnson at greg.johnson@frontiersman.com or 352-2269.
Comments
3 comment(s)cyn wrote on Feb 16, 2009 7:01 PM:
greg kgb wrote on Feb 15, 2009 4:33 PM:
Disapoinnted in Medicaid wrote on Feb 10, 2009 8:24 AM: