Aging in place

LAURA SHUFELT VIVIDLY remembers the February 2013 call from the assisted living facility in Centerville where her mother was living. A nurse at the facility told Shufelt her mother, who was suffering from Alzheimer’s disease, was being transported to Cape Cod Hospital because of unexplained bruises on her buttocks and wrist, pain in her shoulder, and an “altered mental state.”

Shufelt raced to the hospital and was shocked at what she found. “My mother was barely conscious,” she says. “I found her all curled up in the fetal position sobbing with the covers over her head. She didn’t know who I was. She didn’t know anything. She was saying things like, ‘Why did they do this to me?  Don’t let him do it to me again. Why did this happen to me?’  It was horrible!  Absolutely horrible!”

Doctors told Shufelt that her 5’2”, 95-pound mother, Rita Meuse, had a broken shoulder and was severely dehydrated. A nurse discovered bruising around her anus. Shufelt noticed her mother’s engagement and wedding rings were missing. A psychiatrist diagnosed Meuse with post-traumatic stress disorder. To calm the 83-year old, he posted signs in her room saying, “Rita, you are safe here.”

What happened to Rita Meuse highlights why there is growing concern about assisted living facilities in Massachusetts. The apartment-like residences cater to elderly people who need assistance to live independently, yet as residents age and their physical and mental faculties deteriorate, their need for assistance sometimes outstrips the ability of the facilities to provide it.

State regulators are also coming under fire for not regulating assisted living facilities more closely. Operating under a state law passed in 1994 and regulations promulgated in 1995, 1996, and 2006, state officials continue to view assisted living facilities as residential communities where tenants can pretty much fend for themselves. Yet advocates for the elderly say this type of walk-softly regulation is not suited for facilities housing a very frail population in which cognitive impairment is common. They say regulators need to do a better job of making sure the staff at assisted living facilities is properly trained and any complaints or concerns from residents are addressed promptly.

Shufelt’s experience with her mother provides a window into the challenges assisted living facilities face in caring for the elderly and the regulation of those facilities by the state. Shufelt was concerned that others at her mother’s assisted living facility might be in danger, so she called the state Elder Affairs office to urge the agency to investigate. It took two weeks of steady calling to get an agency ombudsman to call her back, she says. When she finally did get an ombudsman on the phone, she says she was promised there would be an investigation, but nothing was ever done. Shufelt discovered there are only two ombudsmen charged with monitoring 224 assisted living facilities housing nearly 14,000 residents.

Ann Hartstein, the secretary of Elder Affairs, says she cannot discuss specific cases. But she insists the assisted living ombudsman program is operating properly. “All complaints are responded to,” she says. “I don’t believe that we need to make any improvements at this point.”

Peter Antonellis, a former long-time employee at Elder Affairs who was fired after speaking out publicly about the agency’s lax oversight of assisted living facilities, says Hartstein is just flat-out wrong. “Having only two ombudsmen to cover over 200 facilities throughout the state is absurd,” he says. “There is no way that just two people can do the job the way it needs to be done.”

A BOOMING INDUSTRY

The assisted living industry is booming, fueled by the graying of America and the desire of seniors to retain some level of independence in their twilight years. Assisted living facilities offer apartment-style accommodations along with meals, social activities, and assistance with personal care needs and medications. The facilities are designed for seniors who can no longer live safely by themselves, but who do not need the intensive, 24/7 medical care available in nursing homes. The intent of assisted living is to allow seniors to “age in place.”

Nationally, there are about 39,500 assisted living facilities providing housing for an estimated 900,000 seniors. Demand keeps growing as the population ages. Here in Massachusetts, the proportion of the population that is 60 and older is growing more rapidly than any other age cohort. More than 25 percent of the Massachusetts population will be 60 and older by 2030, a 33 percent increase from 2012.

In Massachusetts, since assisted living facilities are not considered to be medical facilities, the seniors who live in them are referred to as residents, not patients, and the residency agreements they sign are similar in nature to landlord-tenant leases. Monthly rents generally run from $3,000 to $6,500 and can go as high as $13,000, depending on factors such as resident needs, unit size, and location. Entering residents must also pay upfront a one-time, usually non-refundable, administrative fee (also called a community fee) that can run as much as $5,000. The overwhelming majority of assisted living in Massachusetts is paid for with private funds.

When the Massachusetts assisted living law was passed in 1994, assisted living was intended to be an intermediary step between seniors remaining in their homes and going into nursing homes. It was never anticipated that assisted living facilities would grow into entities that take care of people who are increasingly frail, often with serious medical conditions.

Elder Affairs officials are amending the state’s assisted living regulations to, among other things, make sure those living in the facilities are not too frail or sick. The regulations would prohibit assisted living operators from accepting or retaining residents who require skilled nursing care for more than 90 consecutive days. The regulations would also require a nurse to conduct an initial screening to determine whether a senior is appropriate for assisted living and mandate at least two staff members in special care units, which house assisted living residents with cognitive and other impairments.

But even as regulators are trying to make sure those living in the residences belong there, questions are being raised about whether their regulation of the facilities is tough enough. The most vocal critic, Antonellis, has come from inside the agency.

Antonellis says he had expressed concerns internally about the agency’s oversight of assisted living facilities for years. When he did not see any changes come about, he sent a memorandum in 2013 detailing his concerns to the state secretary of health and human services and the Elder Affairs general counsel.

In the seven-page memorandum, Antonellis said he believed poor management at Elder Affairs was endangering the safety of residents living in assistant living facilities. He noted, for example, that there are no procedures in place for how to handle incident reports from assisted living facilities dealing with such matters as falls, residents wandering off, abuse, and adverse medications. Antonellis said the agency does almost no analysis of the data it collects, which means any pattern of problems at a particular facility are likely to go undetected.

When Antonellis’s assertions were rebuffed, he went public in a story published on the CommonWealth website in September. After he continued to speak out, he was fired in November. The Patrick administration declined to comment on why he was fired, citing the confidentiality of personnel matters. Antonellis declined to release his termination letter on the advice of his attorneys.

Like Antonellis, many attorneys who focus on elder issues have raised concerns about poor oversight of assisted living facilities. Rebecca Benson, a Boston elder law attorney, says she supports the efforts of Elder Affairs to improve protections for residents of assisted living facilities, but she says the problem starts with the agency’s enforcement of current regulations.

“Its current regulations are quite solid, but the agency does not do a very good job of enforcing them. So why would anything be different with new regulations?” Benson asks. “What needs to happen is for Elder Affairs to vigorously enforce whatever the regulations are. Perhaps with a new administration that will happen.”

FEDERAL REVIEW

The federal agency that provides some of the funding for the state Elder Affairs office has spent a year reviewing the agency’s assisted living ombudsman program, questioning whether two employees are enough to cover 224 facilities.

The federal review came to light in documents obtained under the Freedom of Information Act from the federal Administration for Community Living, whose mission is to maximize the independence and health of older adults and people with disabilities.

The agency supports ombudsman programs across the country and provides about $333,000 to Massachusetts, which is used for the state’s ombudsman program for nursing homes. That program has 24 ombudsman offices across the state.

In most states, money provided by the Administration for Community Living goes for ombudsman programs for both nursing homes and assisted living facilities. In Massachusetts, however, the money is used only for the nursing home ombudsman program. The state’s assisted living ombudsman program does not clearly fall under federal jurisdiction because it is part of a so-called residential assisted living model, according to Elder Affairs.

Massachusetts law requires a statewide ombudsman program for assisted living financed through assessments on the operators of the residences. State officials say fewer ombudsmen are needed for assisted living residences than nursing homes because the facilities are run more like apartment complexes catering to seniors.

Hartstein, the Elder Affairs secretary, says two ombudsmen are sufficient. Residents of assisted living facilities “have access to an ombudsman whenever they need it, and it provides the support that people need,” she says.

An official with the Administration for Community Living, who asked not to be identified, says the agency is considering revising its rules to give it jurisdiction over assisted living ombudsmen in Massachusetts and any other states that have residential programs.

“This is something we are obviously taking very seriously,” says the official. “We obviously want to make sure that assisted living residents in Massachusetts have access to high quality ombudsman services.”

The official says the federal agency is hopeful the administration of Gov. Charlie Baker will be more cooperative.

David Hoey, an attorney who specializes in nursing home and assisted living litigation, says state officials seem to be ignoring the intent of the state law requiring a statewide ombudsman program. “So the one that’s supposed to be enforcing the law is ignoring the law,” he says. “That sucks. It jeopardizes the care and the protection and the safety of residents in assisted living facilities.”

RITA MEUSE

Laura Shufelt says the 2013 attack on her mother has convinced her that some assisted living facilities may not be up to the task of caring for elderly residents and state regulators are not interested in making sure they are.

Her mother, Rita Meuse, lived in a locked unit at the Brookside at Regency assisted living facility in Centerville. She moved there in 2011 after her husband, her primary care giver, died. The initial rent was $9,000 a month and rose to $9,900 two years later.

Shufelt says her mother’s Alzheimer’s worsened during her stay at Brookside. “She knew I was Laura, she didn’t always know I was her daughter,” she says. “She also didn’t remember that my dad had passed. It was always, ‘Where is he? Where’s your father?’  It was hard on her. It was hard on all of us.”

Even harder were the injuries sustained during the February 2013 attack. The injuries suggest someone had forcibly stolen Meuse’s rings off one of her swollen arthritic fingers. Shufelt says she believes the bruising around her mother’s anus indicates she was raped, possibly with a broom that was in her room, although the results of a rape kit test came back inconclusive.

The police investigated, but were unable to identify who was responsible. Two employees at Brookside were given polygraphs, but no arrests resulted. “The only way we’re likely to break this case is if the perpetrator tries to pawn the rings,” says Jason Laber, the Barnstable police detective who worked the case.

Meuse was moved to a nursing home and died in May 2013.

Steven Colarusso, the administrator at Brookside, declined to discuss the Meuse case, citing the need for confidentiality.

Shulfelt says she is in the process of filing a lawsuit against Brookside, which is owned by Athena Health Care Systems of Connecticut. “We paid $9,900 a month for the facility to provide care to my mother — care that we learned the hard way was far from adequate,” she says.

Shufelt also believes assisted living facilities may be housing people they are not equipped to care for. “Assisted living facilities, especially those that market to dementia patients, should be licensed and staffed for what they are — medical facilities — and regulated by the Department of Public Health, not Elder Affairs,” she says.

Shufelt still can’t believe the indifference shown by Elder Affairs when she tried to alert the office to what was going on at Brookside. “I thought it was totally bizarre that my calls were being ignored,” Shufelt says. “After all, this was something very serious that had happened to my mom, and there were other people living at Brookside who were just as vulnerable as she was. So I escalated my messages to the point where I said, ‘Look, I need you to call me back. I need your help.’ ”

Finally, after about two weeks of calling, Pauline Edmonds, one of the two ombudsmen, called back. According to Shufelt, Edmonds, a nurse, told her, “There’s only two of us here that cover the whole state, and we have 200 assisted living places we have to oversee. We’re very busy.”

Shufelt says she laid out in detail for Edmonds what had happened to her mother. “She seemed very empathetic and sympathetic and promised that they would be in contact with Brookside, and come down here to investigate within the next week,” Shufelt says.

When she would periodically call the two ombudsmen for an update, Shufelt says they would assure her that the investigation was ongoing. But then they stopped calling her back, she says.

Through the intervention of then-Senate President Therese Murray’s office, Shufelt was eventually able to get a meeting with Stanley Eichner, the Elder Affairs general counsel at the time, and Duamarius Stukes, the agency’s then-director of housing and assisted living.

Eichner told her that “someone dropped the ball,” according to Shufelt. She was stunned. “What about the investigation that your ombudsmen have been saying they’re doing?” she asked. “What about the site visit they said they would do?” Eichner and Stukes admitted it never happened, Shufelt says.

Eichner and Stukes promised that they would now start up the investigation, but they admonished her to stop having Murray’s office call them, Shufelt says.

When Shufelt subsequently made a public records request of Elder Affairs for information involving her mother’s case, she says she was told by assistant general counsel Siobhan Coyle that there were no records because there was no investigation.

“I was appalled that these people, these public servants, would lie to me and lie to me multiple times about investigating my mom’s case,” Shufelt says. “It’s their job to investigate these things. You know, all the empathy or compassion that they seemed to express over the phone, was, it turns out, just words. They talked the talk, but they didn’t walk the walk. They just walked away.”