‘Money follows the person’

Bill could move disabled from nursing homes into own homes

By Scott Finn
Staff writer

HUNTINGTON — It’s not easy being a 43-year-old man living in a nursing home with people twice your age.

Don’t get him wrong — Keith Spencer loves his neighbors. When they die, it breaks his heart. But he just doesn’t belong at Heritage Center, he said.

“The elderly people, God bless them, a lot of them are here to prepare to die,” he said. “But I’m here to live.”

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Spencer has a brain injury that prevents him from moving anything but his head and his right arm. He needs a wheelchair to get around. Like many West Virginians his age, he suffers from diabetes and high blood pressure.

But his mind is sharp. He lived on his own until 1998, when a trip to the hospital turned into a permanent stay in the nursing home.

Spencer, like many disabled people, depends upon the Medicaid program to pay for his care. The state picks up about one-quarter of the cost and the federal government pays the rest.

Now, Spencer has hope again that he could live in his own place, thanks to a bill making its way through the West Virginia Legislature.

The bill (HB4473) is called the “Money Follows the Person Act.” It would allow Spencer to take the estimated $55,000 a year Medicaid spends on his nursing home care and use it to hire the help he needs to live at home.

“Before, I was not getting the help I needed to live on my own,” he said. “Maybe it will work with some extra help.”

Last week, the House of Delegates passed the bill unanimously. It had some powerful sponsors, including Speaker Bob Kiss, D-Raleigh, Finance Chairman Harold Michael, D-Hardy, and Health and Human Resources Chairman Don Perdue, D-Wayne.

The bill’s supporters are hopeful that Senate Health and Human Resources Chairman Roman Prezioso, D-Marion, will put the bill on his agenda soon so it has time to pass by the last day of the regular session on Saturday.

The West Virginia Department of Health and Human Resources and the nursing home industry have not objected to the bill, said Ann Meadows, executive director of the West Virginia Statewide Independent Living Council. They only want to serve people who truly need intensive services, she said, and are anticipating a shortage of nursing home beds as Baby Boomers age.

More than 2,000 West Virginians who live in nursing homes say they’d like to return home, according to the federal Center for Medicare and Medicaid Services. In 1999, the U.S. Supreme Court handed down the Olmstead decision, which says they should be allowed to move back if they are physically able.

For six years, state officials have worked to implement the Olmstead decision. This bill would go a long way toward making that happen, Meadows said. Without it, the state risks lawsuits from disabled people in nursing homes and state institutions.

“If they can be in their homes, they will be more active and productive members of the community,” she said. “I’m not putting down nursing homes. But under the Olmstead decision, they’re supposed to have the option to stay in their own homes.”

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Medicaid should serve the person

When Spencer was 16, he went water skiing with his family on the Ohio River. He fell and a boat struck his head. He nearly died.

Later, surgeons removed part of his brain that controls motor movement. They saved his life, but he lost the ability to walk or even transfer himself from his wheelchair to his bed.

For 20 years, he managed to live on his own. Sometimes he lived with family and other times in his own apartment.

He received some help from a home-health aide, paid for by Medicaid. But the aides only came by for four hours a day, he said. If something happened in the middle of the night, he had to call his family, friends or neighbors for help.

In 1998, Spencer was working at the Veterans Administration as a courier and living in his own apartment in Huntington. One day at work, he passed out. Doctors discovered water on his brain and removed it through additional brain surgery.

He was discharged from the hospital into the Heritage Center, a Huntington nursing home. He’s lived there ever since.

His mother, Naomi Ruth Spencer, says she feels guilty about her son living in a nursing home. For years, she and her daughter, Donna Thomas, drove out to help him any hour of the day or night, even though they lived an hour away in Vinton, Ohio.

But Spencer’s mother has cardiac problems that forced her to have open-heart surgery. She and Thomas no longer can transfer Spencer’s bulky frame into bed. At least the nursing home has 24-hour care, his sister said.

“Somebody’s here if he hollers and he needs help,” Thomas said. “We don’t like him being here, but I’m afraid [of] what might happen if somebody isn’t there.”

Spencer believes he could make it on his own with the right kind of help. He thinks he could do it at no additional cost to taxpayers.

If the bill passes the Senate this week and Gov. Joe Manchin signs it, there’s no guarantee Spencer would be able to leave the Heritage Center. First, it will take at least a year for state officials and disability advocates to develop a plan to implement the law.

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Then, Spencer would have to meet with nursing home staff members, state officials and his family to determine whether he could safely live on his own.

Even if he can’t make use of the new law, Spencer hopes others like him will be able to return home.

Spencer tries to make the best out of his stay at the nursing home. He jokes with the older residents as he wheels by. Almost every day, he takes his motorized wheelchair for a spin through downtown Huntington’s streets.

That wheelchair is a symbol of what’s wrong with the current Medicaid system, he said. Six months ago, his good wheelchair broke down. He’s been using this loaner ever since. But the loaner is much too small for his tall, large frame. A special plate had to be attached onto the bottom so his feet wouldn’t drag along the ground. Instead, they stick out at an uncomfortable angle.

He’s been fighting with state officials to replace the wheelchair. At first, they argued he didn’t need one because he lived in a nursing home and someone there could push him around.

Medicaid should serve the needs of the person, not the other way around, his sister said.

“Because of the nature of his injury,” Thomas said, “he’s fallen through the cracks from day one.”

To contact staff writer Scott Finn, use e-mail or call 357-4323.