What gave Idahoans with disabilities the right to choose where they live?
Amber Grant has been waiting since March for the nursing services her 10-year-old son, Matthew, is eligible for under Medicaid.
“We have had one nurse for four days, and that’s it,” she said.
Pete Freckleton is out of the workforce while he cares for his 20-year-old son, Austin, who has cerebral palsy and other medical issues that leave him unable to walk, talk or feed himself.
Freckleton said a nurse takes Austin to school and stays with him there. But the family is struggling to keep up at home, he said.
Robert Rood relies on a ventilator to breathe and, as an adult, spent years living in the only two ventilator-equipped nursing homes in Idaho. He was so miserable at both that he stopped eating and drinking.
When he tried to live in his own home, Rood could not get enough in-home nursing care to survive. His family moved him late last year to a small residential nursing center in Washington state, where his mother said he is starting to regain his health and the sparkle in his eye.
Federal laws are in place to protect Rood’s and others’ freedom of choice when it comes to where they live. A key Supreme Court decision in the late 1990s cemented the right of people with disabilities to live in the community instead of in institutions.
Idaho Medicaid covers skilled nursing, home meal delivery and many other services for people with disabilities, even if their family incomes exceed the poverty level.
But families and advocates say Idaho is failing to meet the needs of its most vulnerable residents. Without nursing care at home, people with severe disabilities are forced to rely on family members for around-the-clock care, or to live in nursing homes or hospitals.
They blame a nursing shortage, fueled by low Medicaid payments and lack of training.
‘THERE’S JUST NO ONE’
Freckleton has tried for two years to develop a transition plan for his son to live independently as an adult. A married graduate student at Boise State University, he is Austin’s primary caregiver. He is steeling himself for the possibility that Austin may never be able to leave their Boise home.
That worries him — what if Freckleton is injured or sick and cannot care for Austin? — but he also feels mentally, emotionally and physically threadbare after years of full-time caregiving.
That’s a refrain that local nursing providers often hear.
“We always have five or so children at home who need full-time home nursing care, and there has always been enough to supply that need,” said Allyson Reynolds, a nurse practitioner in pediatric surgery at St. Luke’s Boise Medical Center. But for the past year, “there’s just no one,” she said.
When Reynolds reaches out to former home-health nurses who might take on her patients, she finds they have taken higher-paying jobs.
I have 200 hours a week, at any time, that patients have been approved [for] and aren’t getting nursing.
Allyson Reynolds, nurse practitioner in pediatric surgery at St. Luke’s
That leaves parents as the sole nursing staffs for their children, unable to work or even to leave the house, Reynolds said. It means more medical complications that result from a lack of professional nursing. It means more emergency room visits and hospital admissions, creating more costs for insurers, Medicaid, taxpayers and hospitals.
The agencies that hire nurses say they cannot find enough in Idaho to hire — not at the hourly rate Medicaid pays here.
The problem comes down to money in a competitive market for a small — and shrinking — number of nurses, according to state officials and people who run nursing and independent-living agencies.
“Everyone’s like, ‘It’s their fault, it’s their fault,’ and people keep pointing, and all I know is my husband and I are in a really desperate place,” said Grant, of Meridian. “I don’t care whose problem, or whose fault, it is anymore. All I know is that the state says my son is medically eligible to receive these services.”
Idaho’s Medicaid administrator, Matt Wimmer, said he is aware of the problem. Wimmer, who works for the Idaho Department of Health and Welfare, said the Medicaid staff works doggedly to help people get access to care.
But for a ventilator-dependent person like Rood, or a child with complex needs, finding a nurse “can be really quick, [or] can take weeks,” he said.
Last month, Medicaid had 12 people in Idaho on record as receiving skilled nursing services for at least 40 hours a week.
Medicaid paid $1.7 million for a total of 1,465 home-nursing visits — equivalent to five visits per weekday — in the last fiscal year, according to state data. The data do not show how much time nurses spent with patients.
Hundreds of people have found care under the Idaho Home Choice waiver. The waiver is part of the federal “Money Follows the Person” initiative, which allows people to take money the government would otherwise spend on nursing home or hospital care and use it to live independently.
In the past five years, more than 400 Idahoans have left institutions through Idaho Home Choice. About 8 percent have ended up institutionalized again — better than the national average, according to the Idaho Home Choice administrator.
DIFFERENT JOBS, VERY DIFFERENT WAGES
The nurses expected to take these cases are licensed practical nurses, who have been trained in a one-year academic program and passed a licensing test.
But there is a shortage of LPNs in the Treasure Valley and across the state, according to agencies and Idaho Medicaid officials.
And there is a shortage of nurses who want to drive from house to house, taking on complex medical cases — especially when the patient is a child — without the ability to holler at a nearby nurse for help when needed.
Few nurses see the wage as worth the time, the mileage and the challenge of caring for someone who relies on equipment to breathe, eat and move.
“They could work elsewhere and make $45 or $30 an hour, and we’re lucky if we can pay them $25,” said Mickey Palmer, who oversees four offices in Eastern and Southern Idaho for LIFE (Living Independently For Everyone) Inc., an agency that helps people get nursing care and other services to live independently.
“It’s about a person’s choices and wants, and I think that’s what it comes back to,” she said. “It’s their lives.”
Palmer said LIFE Inc.’s clients receive care because the agency has a nurse who takes clients on evenings or weekends on top of her regular full-time job.
Idaho Medicaid pays agencies $29 an hour for LPNs. After the agency takes overhead, the LPN is making less than that. Oregon pays $35 and Washington $37.
Medicaid officials said they have some ability to boost rates case by case to meet a patient’s needs.
But very few schools are training LPNs. The only certification program in the Treasure Valley, at Carrington College, costs $35,000.
Education and money. That sums it up.
Mickey Palmer, LIFE (Living Independently For Everyone) Inc.
The lack of LPN programs is partly because of a nationwide shift to preference for more highly trained registered nurses.
Freckleton said he believes the market for home nursing has been “permanently damaged” as a result of this and other factors.
“It wouldn’t surprise me if our industry couldn’t use another dozen LPNs,” said Karen Young, owner of the Boise agency Progressive Nursing. “In the Boise area right now, if a nursing program could spit out a dozen LPNs, we could probably put every single one of them to full-time, with just the few agencies that do [home nursing for children and adolescents]. We could probably do 12, twice a year, easily, to meet the unmet need.”
Young said, in the current state, her agency can staff about 75 percent of the nursing hours patients are eligible to receive.
The Idaho Department of Labor has approached the College of Western Idaho about the need for more nursing graduates. CWI has an RN program but no LPN program.
“We have been doing some fact-finding to find out if there is enough demand that a program is needed in the area, and what that might look like,” said Jake Garcin, spokesman for the community college.
Some families have asked whether hiring RNs instead of relying on an LPN workforce would help ease the burden on families.
Idaho pays $41 an hour for RN services — much higher than for LPNs, but still lower than Oregon’s $60 or Washington’s $45. After the agency takes a cut, the RN wage also is considerably less than what RNs can make in a local hospital.
The Idaho Department of Health and Welfare itself hires RNs to manage cases and oversee nursing care. And even with the health and retirement benefits of a state job, officials said they still have a 33 percent turnover rate for their RNs and struggle to hire experienced RNs because of competition from hospitals.
COULD MONEY SOLVE THE PROBLEM?
Idaho Medicaid officials said they don’t believe that just raising payment rates would solve the problem. Instead, they argue, that approach would put the state up against Idaho’s health care giants in a losing battle for high wages, and it would not solve the overall nursing shortage.
People who work at centers for independent living, and who run agencies that employ nurses, disagree. One agency said an Idaho client who has private insurance is easy to staff with a home nurse because of the insurer’s comparatively high payment rate.
Mark Leeper, director of the Disability Action Center-Northwest in North Idaho, said his center has one case that involves home nursing, but it is paid for by worker’s compensation insurance in Washington. “We wouldn’t take on a nursing case in Idaho,” Leeper said.
“We’re dedicated to people being able to choose to live wherever they want,” he said. “I don’t see how we could possibly do it on what Idaho is reimbursing.”
It is impossible, Rood and his family said.
Rood’s single mother, Julia Rood, took care of him at home in Boise and Eagle until 2011. She now works full time as a truck driver.
As an adult, Robert Rood has spent months living in local hospitals. He has spent years in nursing homes — most recently in North Idaho after his Nampa nursing home, Holly Lane Rehabilitation and Healthcare Center, lost access to Medicare and Medicaid patients because of serious and widespread patient-care problems that stemmed in part from understaffing.
Rood’s experiences being left unattended and left to sit in soiled clothing were among those that caused the U.S. Centers for Medicare and Medicaid Services to sanction Holly Lane.
Rood, who is in his late 20s, had always wanted to live in the community — in a group home, his own apartment, anywhere he wasn’t in an institution. He applied for, and received, a waiver to get his own place.
“Robert got his own home for a week” last August, Julia Rood said. He was granted four hours of nursing care, and no nurses ever showed up, she said.
He ended up back in the hospital, then in a nursing home in North Idaho. He continued to lose weight and told his mother he wanted to die. When his mother and other family members moved him out of Idaho, the 6-foot-2-inch man weighed 105 pounds.
They moved him to a residential center in Vancouver, Wash., that specializes in patients on ventilators. The move cost the family thousands of dollars.
Rood’s mother said he now receives several types of therapy, his mood has improved and he seems healthier. He shares nursing staffers with only a few other patients, so he gets plenty of attention, she said.
He is covered by Washington’s Medicaid program.
In his new place, Robert Rood said he has his own room with a skylight and frequent visits from a house cat named Eddie.
“I feel they could have given me better care in my own home but instead paid millions to nursing homes and hospitals,” Rood said.
Editor’s note: The rates Idaho Medicaid pays for LPN and RN services, and the turnover rate for RNs hired by the Idaho Department of Health and Welfare, were incorrect in an earlier version of this story. They have been corrected.