Mar 9, 2002 - 11:54 PM
By Cynthia T. Pegram
The News & Advance
Dennis Mispel has an active mind. He likes cable TV news. And the Internet. They give options and energy to a lifestyle narrowed by multiple sclerosis and confined to a nursing home.
Trouble is that Mispel, only 51 years old, has $30 a month allowance to spend on all his personal needs. That is all the money Medicaid allows him to have.
He lives at Centra Health's Guggenheimer Nursing Home in Lynchburg as a Medicaid patient. Under Medicaid regulations, all his income - $1,300 a month - goes directly to the state. Mispel says his roommate "is 94 years old and sleeps all day - he has no need for anything."
"There ought to be some kind of exception in the Medicaid system for people like me, who still want to have a life even though we're in a nursing home," he said. "We still want to watch TV, we still want to have computers, and buy gifts for friends. We want to buy snacks, books, clothes."
The issue is known to the Department of Medical Assistance Services, which oversees Medicaid, the health insurance program for low income families and the disabled who meet the low-income criteria. Medicaid is a program shared by state and federal governments, and in Virginia is financed by about 49 percent state dollars and 51 percent federal dollars.
Federal law sets the allowance level to "at least $30." Thirty states have raised it - some to as high as $75. Virginia is among 20 states that keep the allowance at $30.
The allowance is half what a middle school students receives from his parents, according a survey last year in USA Weekend. The national survey said a typical monthly allowance for a middle schooler is $60.
Last year the Virginia General Assembly killed legislation to increase the allowance, citing the $4 million price tag. This year the General Assembly opted to study the allowance.
"In view of the significant reduction in general fund revenues, it will be extremely difficult to increase the allowance at this time," said Medicaid spokeswoman Nancy Malczewski.
Simply put, Virginia, with its $3.8 billion revenue shortfall, likely won't opt to pay people like Mispel a higher allowance any time soon.
That bothers Keith Kessler, founder of the advocacy group Disabled Action Committee. He says the state has been studying the issue long enough.
"I've been fighting for this the last 10 years," said Kessler of Dale City. "A lot of people don't understand the situation people are stuck in nursing homes on Medicaid. You're stuck. You're trapped."
Kessler says people who live in the community under a specialized Medicaid program for the severely disabled face a similar inequity.
"It gets very confusing for the lay person and even for those within the system," said Kessler, who added that "it could be all be done more efficiently."
While Virginia spent about $470 million on nursing home care in fiscal 2000, the state ranks behind all but 16 states on how much it allocates to its total Medicaid program.
Mispel's monthly nursing home bill is about $115 a day, and Medicaid reimburses Guggenheimer $101 a day.
Mispel, divorced and estranged from his family, has chronic progressive MS, and his eyes sometimes bother him. He is most comfortable in bed rather than in a wheelchair. Next to his bed are his computer and a phone. He has his own TV. Two volunteers from a local college often come in to help him. One is a whiz at computers, he said.
Benjie Davis, admissions director at Guggenheimer, said that requests for computers are very infrequent, but residents can have equipment in their rooms that they can pay for. A TV is not provided.
She noted that Medicaid has a special phone rate. But Mispel says it's for limited to 50 calls a month and he's on the Internet at least twice a day for 30 minutes to an hour each time.
He was given three months free Internet use by AOL, he said, but that runs out next week. The charge will then become $23 a month.
He also wants cable TV. That costs $37.95 a month.
Despite his relatively young age, Mispel's monthly Social Security income is high, he explained, because at one time his income was very high. When his disability coverage ran out, his income dropped from $2,900 a month, to $1,300 a month.
He went into Medicaid spend-down to poverty. He was allowed to keep his van, but he has insurance payments. And of course the van needs gas to run and likely will need repairs.
The ideal, he said, would be to set a limit on how much Medicaid can take from Social Security income, perhaps a $900 limit.
But, in any case, Mispel would like to see the personal needs allowance be raised to $100 for people who don't have a car, and $200 who those who do. "If the rate of inflation goes up 3 percent, there ought to be a 3 percent increase so it keeps up."
According to a 1999 study by the national Long term care Ombudsman Resource Center in Washington D.C., Connecticut is one state that made provisions for inflation increases. At that time, the highest allowances were $75.
Medicaid spokeswoman Malczewski noted that a program is being piloted in the Prince William County area that is providing basic cable and Internet services at a 20 percent discount for certain categories of disabled or elderly.
She also noted that helping out with the costs is an area that civic or church groups might help with.
And some nursing homes already are adding those assists.
Patricia Cawthorne, administrator of The Carrington in Lynchburg, said that most often the $30 allowance upsets the elderly women residents who like to get their hair done once a week, but cannot on that amount.
For one resident who is young but debilitated, said Cawthorne, "we put in an online computer for her use. If you have a population of people who are interested in that, I think you should bite the bullet."
She said the 97-bed home is wired for cable TV in each room.
In the years ahead, said Cawthorne; "we're going to see an increase in the young population. That means more (options) will have to be available, she said. "This is their home."
Mispel is writing state and local officials in a steady effort to get the Medicaid issue out before the public "so we can get public support. You never know who's going to end up in a nursing home some day, cared for by the state.
"I never expected to be in a nursing
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