Old and In The Way

How slow turnings of tiny bureaucratic gears grind up real Texans

5. Congress writes it in English
If HCFA stalls, one course the state's Dee Church suggests as a possibility is the submission of an exempt trust on an individual basis.

"For the interim purposes if somebody sets up such a trust, we will work with our legal staff and handle them on an individual basis trying to deal with HCFA and get clarification. But generally speaking we don't preapprove trust plans," Church says.

"If someone has a pre-existing instrument, we can tell them how it affects Medicaid, but as to telling people how to set them up, that is generally not something we get into."

Mayo is at the head of the line if that option develops, since thus far he is the only lawyer in the state that has submitted a prototype trust to the Department of Human Services. He said he might go ahead and do the trust and file the medicaid applicaiton.

"Now they'll turn me down and I'll file a request for a fair hearing and 30 days later we'll go do that. That means the state of Texas has one setting there they need to make a decision on, one way or the other."

His plan is force the state to make a decision on a specific case.
ne of the problems at this initial phase is that people don't know their eligibility rights and that even many lawyers aren't clear on what options the elderly have.

"This lady called me yesterday practically crying because she doesn't have any money. All her damn money is going to keep her husband in the nursing home and it's horrible," Mayo says "It's a terrible situation, especially when it looks to me like and to most people who can read English, that Congress, who makes these damn laws, said this is what you can do because we know how horrible this is and we want to fix it."

6. The view from Limbo County
As with most issues that involve money and people, politics may be the determining factor.

HCFA may come out with regulations and Austin may or may not hide behind them, but the U.S. Congress is not out of the picture. The federal rulemeisters at least pay lip service to congressional intent, and if enough elected officials with enough steam apply it in the right places, exempt trusts in income cap states could achieve what Mayo, Perlin and potential beneficiaries hope.

Mayo says, "I'm telling people the best time and money they can spend is to call their congressman, tell their congressmen what a wonderful job they did in passing this law ....but now the Health Care Financing Administration has saw fit...to draw an 'X' across the law they just passed."

"The bottom line is if we get enough people calling HCFA, whether they're going to get the regs out or not, they can make a reversal in midstream and say "Wait a minute, we're getting heat. The congressmen who passed this sucker are calling wanting us to do something about it.'" Mayo says. "I'm hoping if enough phone calls get made, they're going to say, 'Hey, wait we better rethink this thing.'"

Pate's son-in-law, Tom Farris, is irritated because the help he thought was on the way now seems distant or lost.

"As far as we know, it's in a state of limbo. It appears to me, course I'm just a poor country boy, but it looks to me like Congress has said 'Hey, we want to protect these people and here's what we're going to do.' But some agency head...looks at it and says no, we're not going to release the funds. '"

If the trust proposal fails to provide relief for the elderly in the 13 income cap states, the National Academy of Elder Law Attorneys, based in Phoenix, is preparing technical amendments that could be used by Congress to clarify the meaning and intent of the exempt trusts.

"If enough congressmen hear about this crap and realize they made their best shot and HCFA's not going to cooperate with the effort, then it's very easy for them to pass those technical amendments and fix some of these problems," Mayo says.

"I have to be optimistic. You have to realize if this doesn't work, the eight or nine people on my list, and I had another one call me this morning, they die. I can't fix it, it's not like we're going to Plan B."

7. Do nothing, mumble loudly
Perlin has fought the good fight since 1983 when he joined Texans for the Improvement of Nursing Homes, Inc. Now he's the president and mainstay of the group which he operates from his southwest Houston apartment. He isn't about to give up the struggle to help the elderly in need.

Perlin is blunt and quick with a response as to why Texas handles its elderly affairs in such a miserly manner. It's all about money.

The state, where it suits their purpose, says "we're waiting for HCFA." Where it doesn't suit their purpose, they go ahead and make a rule.

The state really doesn't have to wait for HCFA to make the rule, they understand the law and they could make the rule if they wanted to take care of people.

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