By Jenni Bergal for Kaiser Health News
This story was produced in collaboration with USA Today .
The 2.3 million elderly or disabled people living in nursing homes or assisted living centers might not know it, but they've got an advocate - someone who's supposed to be looking out for their health, safety and rights.
In 2011, state long-term care ombudsmen - assisted by hundreds of local ombudsmen programs and thousands of volunteers - responded to 204,000 complaints nationwide. They ranged from roommate conflicts to lack of privacy to allegations of abuse or neglect.
State ombudsmen also are expected to testify before the legislature, talk to the media and take a public stance on long-term care issues, without interference by government officials.
But that's not always the case. While ombudsmen in some states maintain their autonomy, in other states conflicts have erupted and government officials have been accused of trying to muzzle ombudsmen, especially when they publicly disagree with state policies or battle industry officials.
Among the controversies in recent years:
- In Florida, the state ombudsman - for years considered a thorn in the long-term care industry's side - was ousted in 2011 under orders from newly elected Gov. Rick Scott. This prompted a state senate hearing and a federal Administration on Aging investigation, which found that the action "raised troubling concerns" and that Florida had violated the spirit of the Older Americans Act, which created the ombudsman program.
- In Iowa, the state Department on Aging's director resigned in 2010 amid allegations that the administration had tried to thwart the state's ombudsman.
- In California, local ombudsmen campaigned for three years to strengthen the state ombudsman's independence, arguing that he wasn't able to take positions on long-term care issues that clashed with the governor or state officials. In 2012, the legislature enacted a bill that beefs up the ombudsman's independence.
"Ombudsman independence has been a longstanding hot-button issue in a number of areas, both at the state and local level," says Lori Smetanka, the director of the National Long-Term Care Ombudsman Resource Center in Washington, D.C., which provides support and training to ombudsmen. She and her staff regularly hear from ombudsmen who say their ability to speak out is being challenged or limited.
"Sometimes it's an issue of personalities," Smetanka says. "Sometimes, it's state policies that get in the way. Oftentimes, it means that there is no one speaking out for nursing home residents or that their voice is not being carried to that higher level."
The $87 million-a-year ombudsman program dates to 1972 and today operates in every state, the District of Columbia, Puerto Rico and Guam, along with 576 local ombudsmen programs, serving all long-term care residents. The program, funded mostly by the federal government and states, has 1,185 paid staffers and 9,065 trained volunteers nationwide.
Ombudsmen can't impose sanctions or levy fines, but the law requires them to investigate complaints and advocate for improvements to the long-term-care system. They usually refer serious violations to state licensing officials.
Ombudsmen are also required to report whether they have visited long-term care facilities at least quarterly to find out how residents are doing. In 2011, ombudsmen visited 70 percent of all nursing homes and about 33 percent of all board and care and assisted living centers at least once every three months.
Among the most frequent complaints they investigate: improper discharge or eviction, lack of respect from staff, poor quality food and medication problems.
Other examples: In Maryland an ombudsman assisted a 68-year-old nursing home resident with Parkinson's disease in getting her wheelchair repaired after it had been broken for months. In Oregon, an ombudsman helped a 95-year-old veteran who lived in a nursing home get a refund after he was scammed by a telemarketer. In Michigan, an ombudsman helped a 49-year-old woman with multiple sclerosis transition out of a nursing home to her own apartment after a legal battle to remove her guardian.
"So many of the people who live in nursing homes don't have family members," says Mitzi McFatrich, the executive director of Kansas Advocates for Better Care. "They are truly vulnerable. If you're being overcharged, if you're not properly cared for, if you're being given antipsychotic medications to keep you in line, without the ombudsman program, those residents don't have any place to turn."
For Bob Jones, having an ombudsman was "a great relief."
The 84-year-old former chef badly wanted to leave his Walla Walla, Wash., nursing home. Jones, a stroke victim who suffers from mild dementia and pulmonary disease, had become withdrawn and had lost 47 pounds.
That's when volunteer ombudsman Carolyn Mosebar came into his life. The 78-year-old retired nurse helped Jones move out of the nursing home in October and into a family care home owned by a couple he knew.
"Carolyn was an advocate and she was a darn good one," says Jones, who also worked as a stuntman in Hollywood and used to go fishing with Roy Rogers. "She got my confidence back. By being there, she gave me hope."
While local ombudsmen across the country have the freedom to help individuals such as Jones, it's a more slippery slope when it comes to state ombudsmen advocating publicly on long-term care issues.
Part of the controversy revolves around how the states have structured their ombudsmen programs. Most are part of state government. Others are located in nonprofit or legal assistance organizations. And in seven states, including Washington, Maine and Colorado, the ombudsman program is located within a nonprofit or legal assistance organization. In five states, including Kansas, New Jersey and Oregon, the governor appoints the ombudsman.
Some experts say it's a bad idea for the program to be within state government.
"I think the ombudsman programs outside of state government have more independence and are less subject to political pressure," says Eric Carlson, an attorney at the National Senior Citizens Law Center in Los Angeles.
A 2007 survey by the National Association of State Long-Term Care Ombudsman Programs found that more than a third of state ombudsmen said they needed prior approval before testifying about long-term care issues and that one in five said they were not allowed to initiate contact with legislators.
Some ombudsmen argue that there are advantages to being located within a state agency, such as having access to decision-makers and clerical and IT support. Many say that the state's culture is more important than the program's location.
"For some states, it has been an awkward fit. We're actively working with a number of them so they don't have the situation in which ombudsmen would be muzzled," says Becky Kurtz, director of the federal Office of Long-Term Care Ombudsman Programs, which administers the program.
Kurtz and other experts believe that shackling an ombudsman can directly affect long-term care residents. For example, if a state is considering reducing the number of staffers required in nursing homes or cutting a Medicaid benefit, the ombudsman must have the freedom to come to the table and represent residents' interests, they say.
Even state units on aging agree that the ombudsman program needs to remain an independent voice.
"Sometimes, state officials don't understand that the ombudsman's role is unlike any other state employee and that federal law requires autonomy," says Deborah Merrill, senior policy director for National Association of States United for Aging and Disabilities. "Over the course of time, some states have struggled with it. Florida is the most obvious."
Brian Lee was Florida's state ombudsman for almost eight years until he was forced to resign.
"The nursing home industry and the adult care industry hated me. I was very outspoken," says Lee, who is now executive director of Families for Better Care, a Tallahassee-based advocacy group.
In January 2011, everything came to a head when Lee asked Florida's nursing homes to provide his office with detailed corporate ownership information, citing a provision in the new Affordable Care Act. Less than two weeks later, the governor's office told state officials that it was time for Lee to go.
Florida officials maintained that Lee's departure was part of the normal turnover that occurs with a change of administration. They said the governor's office wanted the ombudsman program to "go in a new direction," according to an investigative report by the federal Administration on Aging.
Four days after Lee was ousted, the state retracted the request for nursing home corporate ownership information.
This article was produced by Kaiser Health News with support from The SCAN Foundation.