Homecare a lifesaver for many seniors, but funding is in jeopardy 

Charles Harper married his high-school sweetheart, Charlotte, 20 years after graduation. They had rekindled an old romance at a high school reunion.
The couple lived in a nice Mamaroneck, N.Y., townhouse and had good jobs. Things changed, though, one day in early 2001 when Charlotte was walking to work. She collapsed when an aneurysm burst in her brain stem, and a blood clot left her paralyzed on the left side.
Her circulation became progressively worse, leaving her unable to bear cold weather. So, after travelling the country, the Harpers settled down in a cramped motor home in El Mirage.
At 66, Charles has become more than a husband. He is Charlotte’s caregiver. Confined to a wheelchair, Charlotte, 65, is unable to prepare her own meals. She can’t bathe herself. She can’t get out of bed without help.
“I’ve had different jobs, but this is the hardest work I’ve ever done,” he said.
But his labor of love has become easier. An aide visits two hours every weekday morning to help Charlotte get out of bed and into a bath. She prepares meals, takes Charlotte out for walks —  and allows Charles to have a little time to himself, which he uses to run errands or to just take a breather.
Charles said they couldn’t afford paying for the aide’s services —  called respite care —  on their own. They have racked up $250,000 in medical bills and have filed for bankruptcy.
Their respite care comes at no charge. The Harpers aren’t the only recipients. Some 8,000 homebound seniors —  60 and older —  receive non-medical homecare and daycare services in Arizona. They get help with housekeeping, chores, personal care and respite care. The state, through the Department of Economic Security, picks up most of the tab.
But given a $3 billion state budget deficit in fiscal 2010, the program could get the ax. The Department of Economic Security is slated for a budget reduction of $100 million in the upcoming year, in addition to funding reductions sustained in fiscal 2009.
“We’re talking dire straits,” said Mary Lynn Kasunic, Region One Area Agency on Aging CEO and president. “I don’t know what we’ll do when we have to tell 8,000 people that there will be nobody providing services starting July 1.”
Homecare funding is distributed to regional Area Agency on Aging offices, which contract out for services. Region One covers Maricopa County. Cuts to the program have already been made, which resulted in a waiting list for services that includes about 1,000 residents, Kasunic said.
On top of that, demand is growing.
“We get over 43,000 calls a year from people looking for services,” Kasunic said.
These services help seniors get through the daily routines most of us take for granted.
“We go out and give homebound people about two baths a week,” Kasunic says. “We also go and do laundry, maybe go grocery shopping for them, maybe clean.”
Going without homecare is no small thing, said Lupe Solis, AARP’s associate state director for advocacy.
“No one would want to be dependent on having one bath a month,” Solis said. “It’s inhumane.”
In a news release, the Region One agency noted alternatives to the respite care program could prove to be a lot more expensive in the long run.
Without homecare, many seniors could end up in state-funded nursing-home care, at an average cost of $42,000 a year, according to the agency.
On the other hand, Kasunic said, “we spend, on average, $2,200 a year to keep people in their homes.”
It’s not strictly a matter of money, though, she said. It’s a matter of decency as well. If the services are eliminated, seniors dependent on them might not want to go into a nursing home —  even if they should. Without proper care, their conditions likely would worsen. Some would probably end up in the emergency room, Kasunic said.
“Eventually, they would end up in an institution,” she said.
Guy Mikkelsen of the Foundation for Senior Living put it in starker terms. He said the state is on a course to abandon its seniors.
“We can take them out to the desert and then tell them, ‘good luck,’” Mikkelsen said facetiously.
The foundation is a Catholic charity and provides senior home services under contract with the Area Agency on Aging. Mikkelsen said the cuts are an attack on the indigent.
Not all the seniors receiving homecare are in financial trouble.
Bob and Marcia Kohl have a comfortable house in Goodyear. Marcia, 65, recently broke her foot and is using a wheelchair. Still, she is the caregiver in the home.
Bob’s spinal-cord injury is permanent. In 2006, while attending his 50th high school reunion in Milwaukee, he passed out, hit his head and —  in the blink of an eye —  became a quadriplegic. They live in a nice house because Bob had a solid white-collar job in computers and saved for his retirement.
Even though they had planned ahead for retirement, the recession wiped out most of their savings, Marcia said. They cannot afford respite care on their own. But, with a small co-pay, they receive services through the Area Agency on Aging.
Their aide, Brenda, comes in three days a week, four hours a day. That leaves Marcia enough time to do the shopping and other chores. She’s also taken on all the household tasks that Bob once did —  from paying the bills to making sure the swimming pool is maintained.
“I think I would have gone crazy without Brenda,” Marcia said. “If I’m really exhausted when she comes here, I can lie down, take a nap.”
In other households, the stress of homecare can take a darker turn, said Solis of AARP. It can even lead to elder abuse, she said.
Marcia has reached out to the Legislature to advocate for continued funding for respite care.
“I’ve called our regional lawmakers,” she says, naming off Reps. Jerry Weiers and Steve Montenegro and Sen. John Nelson —  all District 12 Republicans. In each case, she talked to their assistants. The response was polite but non-committal.
Other seniors have visited the Capitol personally to tell their stories.
Dona Campbell, 64, testified to a Senate panel that was reviewing funding for programs within the Department of Economic Security. She told the Public Safety and Human Services Committee on April 15 that she had cared for her own elderly mother, Vivian, for five years, until her death in December at age 86.
Her mother, living on $450 a month in Social Security, could not have made it own her own, Campbell told the Arizona Capitol Times.
Campbell also cared for her mother’s friend, Mildred Schulz, who died in July at the age of 92.
Campbell said she counted on homecare and adult daycare services for help. She now volunteers for the Area Agency on Aging, and sees others struggle with the same issues.
“I don’t know what’s going to happen to this population of people who have done so much for their country,” Campbell said. “They’re just going to be brushed aside.”
Along with Kasunic and others, Campbell testified in opposition to proposed cuts.
One Democratic senator on the panel said the testimony brought up reason for concern.
“We’re talking about really basic needs for some of our most frail and vulnerable,” said Sen. Rebecca Rios, a Democrat from Apache Junction.
Committee Chairman Sen. Linda Gray, a Republican from Phoenix, has opposed eliminating homecare for seniors. She said the Department of Economic Security shouldn’t have included such heavy cuts to the program when it submitted budget suggestions to lawmakers and the governor earlier this year.
As fiscal policy, eliminating homecare for seniors makes little sense, Gray said. She said DES should find other ways to reduce spending.
 “This little bit of assistance, it keeps them from going into a nursing-care facility,” she said.
More than two months ago, the chairmen of the House and Senate Appropriations committees proposed slashing the department’s fiscal 2010 funding by $100 million or more. A new GOP proposal also includes that reduction.
If carried out, the cuts would put the Department of Economic Security in a bind. Kunasik said the department is prevented by law from cutting funding for many of its programs and services and, instead, has been forced to target discretionary programs, including senior homecare.
Seated next to his wife in a small living room back in El Mirage, Charles Harper said he’ll do all he can to make sure his wife receives proper care. He said the issue is about more than just money. The kind of care Charlotte receives gives her a sense of self-worth.
“Feeling better about herself,” Charles said. “That’s the most important thing —  that she feels better about herself.”
Charlotte often repeats phrases involuntarily because of her injury. But after hearing her husband promise to take care of her “as long as I can, until I’m more of a hindrance than a help,” it’s clear that she means what she says.
“You’re a wonderful man, wonderful man,” she tells Charles.