For many with disabilities, life is a waiting list

“New normal” for Kevin Martin is listening to his 7-year-old daughter’s bedtime stories by telephone. It’s family dinners of takeout food at his nursing home. And it’s waiting. A lot of waiting.

“I’m kind of in limbo,” he said during a recent visit with his wife and daughter.

Martin and his wife, Lisa Hodes, are used to waiting. For months, Martin, who has multiple sclerosis, was on a waiting list for a state program that would pay for a personal care assistant to help him live at home safely. But the program is full, and has 116 people on the list.

Kevin Martin Lisa Hodes

Kevin Martin, Lisa Hodes and their daughter, Jingju, at Martin’s Madison nursing home

So Martin tried to live at home without it, rationing the 80 annual visits his private health insurance would cover for aides to help him shower, dress and prepare a meal. Being alone wasn’t safe; many times, Hodes came home from work to find her husband on the floor surrounded by broken dishes, having been there for hours.

In December, seven months after applying for the state home care program, Martin was hospitalized and discharged to a nursing home.

Now Martin, 58, is waiting for another program that could help him move back to the community. The state is expanding the program, called Money Follows the Person, with hopes of helping 5,200 people move out of nursing homes by 2016. It’s aimed at changing the way long-term care is provided in the state, to allow more people to receive care outside of institutions.

Advocates for seniors and people with disabilities applaud the expansion, but say it only addresses part of the problem. To get into Money Follows the Person, someone must have been in a nursing home for at least three months. Meanwhile, advocates say, people trying to stay out of institutions are stuck living in potentially unsafe situations at home, unable to afford the assistance they need and left to wait for more than a year for a program to cover it.

Martin knows he’s safer in the nursing home, and it means Hodes can go back to being his wife, not his nurse. But there aren’t many other positives, he says. He sees his wife and daughter three or four times a week. Nearly all of his fellow residents are decades older than he is. He has far less control than he did at home, where he managed his own medication. Martin and Hodes used to take turns reading to their daughter, Jingju, at bedtime, but now he can only participate by telephone or, when the Internet signal in the Madison nursing home works, Skype.

And if Martin gets home care through Money Follows the Person, it’s not clear where home will be. He and Hodes sold their condominium after he became unable to climb stairs, and rented an apartment in New Haven. But because the nursing home gets most of Martin’s Social Security income, the apartment became unaffordable on Hodes’ salary alone, and she and Jingju moved in with her 82-year-old mother.

“It’s always a big long way around to the good news,” Hodes, a social worker, said. “In some ways, he’s better off in this program than the other, but we had to go through hell to get here.”

Huge waiting lists

There are nearly 600 people on waiting lists for three Medicaid home care programs, known as waivers. Anyone in the state who qualifies can get Medicaid coverage for nursing home care, but the home care programs have limited slots and varying criteria. Advocates refer to them as “silos.”

Susan Raimondo, senior director of advocacy and programs for the National Multiple Sclerosis Society, Connecticut Chapter, tells people who qualify for a home care waiver to get their names on a list.

“I tell them that the reality is that the waitlist is huge, that they’re going to have to wait at least a year for services,” she said.

And she advises them to be creative about getting help while waiting. Could they qualify for Medicare and get as much help as possible? Are there creative solutions? Do they have an extra room in the house where someone could live and provide care?

“Is bartering an option?” she asks them.

Raimondo said it’s hard to tell how long the waitlists really are because it’s not clear whether people dropped off the list. An analysis to determine the number of people really still waiting would help, she said.

“As a state, there isn’t a solution right now” to addressing the need for long-term home care, said Sherry Ostrout, director of government initiatives for Connecticut Community Care, Inc., which provided care coordination for Martin as part of a contract with the MS society.

“There’s an extraordinary bias to institutional care,” she said.

Ostrout and other advocates want the state to take advantage of a new federal option that would make it easier for seniors and people with disabilities to get home care services. But to do so would require changes that the state Department of Social Services has said would be unaffordable.

There’s no question that home care tends to cost significantly less than nursing home care. The program Martin tried to get into before the nursing home costs an average of $28,000 a year per person; a nursing home costs about $80,000. Moving people from nursing homes to home care, as in Money Follows the Person, can save the state money by changing the type of care people already receiving state coverage get.

But using the option advocates are promoting to expand home care would require the state to cover everyone who qualifies; no one could be waitlisted, and the state would have to take on the cost of services people on the waitlists now pay for, or do without. The legislature’s nonpartisan Office of Fiscal Analysis projected that serving everyone who is now waitlisted would cost $20.4 million a year, about half of which would be reimbursed by the federal government.

Martin said it seems like you almost have to cheat to get help.

“You have to be either very poor or very rich to be able to stay in your own home and get services. And we’re not the rich,” he said. “So we talked about getting a divorce so that Lisa could keep some money.”

His lawyer told him judges are smart about people trying to finagle the system.

“And it would have meant one of us had to lie about having irreconcilable differences that we didn’t have, and that wasn’t going to feel good,” Hodes added.

“So we decided not to get divorced,” Martin said.

“A real shock”

Martin’s transformation from an outgoing, avid runner to a largely isolated nursing home patient in a wheelchair happened faster than he or his wife expected.

Before getting sick, “I felt really good about myself,” he said. “And I thought I’d live forever. And be able to earn money. So this has been a real shock.”

He started getting fatigued and wobbly when he walked, slurring his speech, falling asleep at his desk at work and sneaking naps in his car. He lost his job because, he thinks, the company thought he was drunk.

He had been dating Hodes for six months when he was diagnosed in 1999. When they got married five years later, Martin walked with a cane. He was in a wheelchair when they adopted Jingju from China two years ago.

“The conversation I kept having with myself was, ‘Well, I can deal with physical disability, his mind is there, I will always have that,'” Hodes said. “But I had no idea what I was talking about, what it’s like to live with physical disability, as much as the man I love is in there.”

The progression of MS is unpredictable, and Martin’s moved more aggressively than they anticipated. Hodes got used to bracing herself before she opened the door after work, worried how she would find her husband.

After losing his driver’s license and much of his independence, Martin began to feel trapped, and he tried to fend for himself as much as he could. One night, while trying to do laundry, he hit the joystick on his wheelchair as he leaned forward and got thrown to the floor, slicing his ear on the baseboard. He decided not to wake his wife, who woke up the next morning to find a trail of blood.

“He would do things trying to make it easier on me, but end up falling on his face anyway and making things harder in the long run,” Hodes said.

“She’s become a single parent for her daughter and for her husband,” Martin said.

To Hodes, having Martin at home seemed to perpetuate a bad cycle. He would go to the hospital for an infection that compromised his MS and lose all his strength before being discharged. Rehabilitation services weren’t particularly helpful; either they weren’t good, she said, or things would get in the way, like Martin’s fatigue causing him to sleep through the buzzer when the physical therapist came. Eventually, they would be told the services couldn’t be justified anymore. And Martin would deteriorate and eventually, go back into the hospital with another problem.

“What was really frustrating to me as the caregiver was nobody was dealing with what was happening once they discharged him from the hospital,” Hodes said. “Anytime he went into the emergency room, some of the first words out of my mouth is, ‘He can’t come home. He can’t come home to what he’s been getting. I can’t take care of him.'”

Martin, meanwhile, “wanted to go back home and struggle,” he said.

But in December, he was hospitalized again, and this time, he went to Madison House Care & Rehabilitation Center for rehabilitation. After insurance stopped covering rehab, he stayed for long-term care.

“I feel really guilty,” Martin said. “I feel cheated that I’m not able to be home with my daughter.”

He hopes Money Follows the Person will change that. He’s waiting to find out. Their back-up plan, if Money Follows the Person doesn’t work out, is to try to get Martin transferred to a New Haven nursing home, so spending time together as a family won’t require a commute.

But the homes closer to Hodes and Jingju don’t have beds available for him. Martin is on their waiting lists.