From The Wichita Eagle. This story shows the state's misunderstanding of the costs for staying at home. Study after study shows that people with disabilities living at home is cheaper than living in a nursing home. In Wisconsin, the Community Options Program (COP) says care in people’s own homes and other community settings is 29% less than the average public cost of nursing home care ($60.64 vs. $85.85 average daily costs).As she lay in her hospital bed about a month ago, 28-year-old stroke survivor Nicolette Perez (pictured with her mother) was asked how she felt about the prospect of living in a nursing home. She immediately and emphatically turned her thumb down -- the stroke had taken her ability to speak.
Her parents took her home instead. She's slowly relearning to talk and walk, although her voice is weak, her steps unsteady, and she falls a lot.
The government would pay for Perez to live in a nursing home.
But because of complicated quirks in state and federal law, the government won't pay for her to have an aide come to the house to help with routine daily tasks such as eating and bathing -- even though everyone involved agrees that would be cheaper for the government and better for Perez.
Federal Medicaid law considers nursing-home care an entitlement. Home- and community-based services are an option, subject to available state funding.
And in a tough budget year, with a rising number of people with disabilities to care for, Kansas can't afford to provide home services to newly disabled residents like Perez.
Before she had her stroke Oct. 29, Nicolette worked as a hatter, designing and making hats for a Wichita shop. The job didn't offer health insurance, so she wound up being covered by Medicaid.The Medicaid- and state-funded program that pays for home and community care has been frozen since Dec. 1.
One possible solution could come from Vermont.
If Nicolette and her family lived there, the state would pay for home care -- with no pressure for her to go to a nursing home.
Vermont rewrote its laws and renegotiated its contracts with the federal government to give disabled people a choice between institutional care and home care.
In doing that, Vermont substantially cut the number of high-cost nursing-home days it pays for, freeing an estimated $80 million a year to expand home- and community-based services.
"It takes away what is called the 'institutional bias,' " said Joan Senecal, commissioner of the Vermont Department of Disability, Aging and Independent Living. "The goal was not to save money, but to serve more people with the same money. It's worked out very well."
When Vermont launched its "Choices for Care" experiment in October 2005, the state served 3,447 people. Today, it serves 5,041.
Assistance has been expanded to people with moderate disabilities who would not have qualified under the previous guidelines, similar to what Kansas has now.
Vermont had 241 "high needs" applicants on a waiting list for service in 2005. Now, it has 56.A key feature of Vermont's program is that disabled people can choose to spend their aid allowances to pay a family member to stay home and take care of them.
A program like Vermont's would be a godsend for Nicolette and her family, said her mother, Alicia McCurry, who has become her chief caregiver and spokeswoman.
McCurry works as a nurse in a doctor's office. Her husband, Brad, is a rancher.
Each makes $35,000 to $40,000 a year; if one gave up a job to take care of Nicolette during the day, the family income would be sliced in half.Alicia McCurry's day begins between 4:45 and 5 a.m. She has to get up that early to help Nicolette get ready.
Nicolette has to eat slowly and all her liquids have to be thickened to prevent choking.
Just about everything she does takes twice as long as it would for an able-bodied person. It's a quandary for her mother: The more she helps, the faster it goes -- but the less Nicolette gets the practice she needs.
On her way to work, McCurry drops Nicolette off at the home of her father, Philip Perez. He cares for his daughter during the day and drives her to therapy sessions, although he has also had a stroke and walks with a cane. If Nicolette falls, he needs help to get her back on her feet. McCurry picks up her daughter after she gets off work at 4:30 p.m.
After grocery shopping or other daily errands, it's time for dinner, then Nicolette's bath and bedtime at 9 p.m.
"Your day is basically gone before you know it," McCurry said. "It's very exhausting."She sleeps lightly, against the worry that Nicolette might need help or fall during the night, which she has done.
Kansas lawmakers who have read a synopsis of Vermont's plan and its results say it might offer a road map.
"That's what happens when you let the free market work," said Rep. Peter DeGraaf, R-Mulvane. "You give people choices and it creates competition and people end up with better services and lower costs."
Sen. Dick Kelsey, R-Goddard, said he thinks the Vermont experiment might offer some help for Kansas.
"I definitely think it has to be looked at," he said. "They obviously have a model that might give us some guidance."
Medicaid spokeswoman Mary Kahn said Kansas could seek to change its service delivery by amending its existing program waiver or changing the overall state care plan.
Either option would require state legislation and would have to be approved by Medicaid, she said.
Kansas Social and Rehabilitation Services Secretary Don Jordan and Secretary on Aging Kathy Greenlee agreed that the key to more efficiency is to reduce nursing care and increase home and community care.
Costs vary, but on average, it costs $38,748 a year to care for someone in an institutional setting in Kansas; it costs $24,031 for home- or community-based care, according to a new joint report on long-term care by the SRS and Department on Aging.
Jordan and Greenlee said they will be looking at Vermont and other states for ideas.
For example, Greenlee said, Washington state has taken a "universal budget" approach, combining services for the physically disabled, the mentally disabled and the frail elderly under a single umbrella.
Kansas has emphasized moving the mentally disabled out of institutional care. Its efforts have earned a top 10 ranking among states, Jordan said.
Until recently, the program for people with physical disabilities has not gotten as much attention. The program for people with mental disabilities perennially has a waiting list for services. The program for people with physical disabilities didn't until last year, when an unexpected jump in enrollment forced the freeze on new participants.
The program grew from a monthly average of 6,500 recipients in 2007 to 7,300 last year. The budget bill that recently passed the Legislature included an additional $2 million for physical disability services.
But Jordan said he plans to keep the freeze in place for at least another month or so, until the state gets a handle on the 2010 budget and figures out the effects of the recently approved federal economic stimulus package.
The state also has signed up for "Money Follows the Person," a new multistate effort to move both physically and mentally disabled people from nursing homes back into the community.Greenlee said if the bias toward institutional services were removed, she would expect to see more people opt to stay in their homes than seek nursing-home care.
But, she added, she doesn't see a major overhaul in how the state helps physically disabled and frail elderly people coming until the state can eliminate the waiting list for mentally disabled people.
Nicolette and her family are watching to see how it all shakes out.
Despite the difficulties, McCurry said she is committed to keeping her daughter at home."She's 28. She doesn't belong in a nursing home," she said. (Bf added by Media dis&dat).
While Nicolette lives at home, Medicaid will pay for access to the aggressive therapy she needs. If she went to a nursing home, it wouldn't.
Nursing homes do provide some therapy, but it's geared mainly toward helping elderly people stay flexible and active, McCurry said.
"What's going to happen if we put her in a nursing home and she loses function?" she said. "They wouldn't even have a remote idea of what to do in a nursing home."
McCurry said she's thankful that she is a nurse. But she worries about others in similar situations who don't have that background.
"If I wasn't a medical person, I'd have been petrified to bring her home," she said.
Until something happens with the funding, about all Nicolette and her family can do is hope.
"We don't know how far Nicolette will go right now," McCurry said. "We keep praying things are going to get better -- and they are."
