Delaware assisted living regulations haven't been changed in decades. Is now the time?

Editor's note: A Delaware Online/The News Journal investigation found that the state has failed to police assisted living facilities in the past decade, even as high numbers of abuse, neglect and falls are reported to the Division of Health Care Quality. State surveyors had not inspected many of these assisted living communities for years.

Six families spoke to The News Journal about one facility in particular, Arden Courts, in which they say their loved ones faced abuse and neglect. Interviews with experts, advocates and caregivers say the issues at Arden Courts represent the larger concerns of the state of dementia care in Delaware. 

One of the first major newspaper advertisements for Arden Courts was published in September 1997.

It features a woman, who appears to be in her 50s. Her nails are painted, her seemingly brown hair styled in a short bob with bangs. She’s looking off camera.

“Since Mom has Alzheimer’s, she’s not cooking much anymore,” The News Journal advertisement read. “In fact, she’s not even safe in the kitchen.”

Arden Courts marketed something entirely new to Delaware – a modern alternative for people living with Alzheimer’s disease or dementia. This assisted living facility, with less than 60 beds, could become home to people with early to middle stages of the degenerative disease. It would be the first in Delaware.

Twenty-five years later, Arden Courts is now one of the 30-something assisted living facilities in Delaware. Many offer “memory care units,” targeting vulnerable Delawareans living with progressing dementia and Alzheimer’s disease.

Yet since then, the regulations have not substantially changed.

Interviews with advocates, experts and current and former state officials say Delaware code is outdated to the needs of current-day assisted living residents, particularly since many have dementia.

Delaware, like other states, has vague language in its requirements for assisted living facilities. Some of this wording, experts and advocates say, likely results in a wide variability in the types of dementia care these facilities offer – and could affect the quality of care.

“These places market themselves as memory care,” said Maggie Goonan, who struggled to find a suitable facility for her mother. “However, they're only interested in caring for those that are pleasantly confused.”

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There have been attempts for some reform, but efforts to pass meaningful legislation stalled this year. Many assisted living representatives have pushed back on aspects of these bills.

Assisted living facilities continue to struggle following the pandemic. LeadingAge, an industry organization that represents long-term care, found in a spring 2023 survey of assisted living facilities that 70% reported facing a “significant or severe workforce shortage.”

The emotional toll of the pandemic and the effect it has had on those working in long-term care still lingers.

“Long term care providers didn't get much praise for the work that they were doing,” said Jim McCracken, president and CEO of LeadingAge New Jersey & Delaware.

“These people are burned out; they're stressed out,” he said. “They're overworked. They had just gone through something that they've never seen or had to go through before. They're healing from that and trying to do the best that they can.”

A ‘green light to neglect’

Days after that Arden Courts advertisement was published in The News Journal, then-state Sen. Robert Marshall summoned a press conference at a Claymont senior center.

He announced the creation of the State Legislative and Citizens Investigative Panel on Nursing Home Reform, the first time nursing home practices were fully investigated in Delaware since the 1960s.

In the following months, hundreds of Delawareans packed into public hearing rooms to describe horrifying conditions. A series of laws were passed that changed how nursing homes operated.

Assisted living facilities were not mentioned in any of the panel’s findings or recommendations.

Today, assisted living residents are older and sicker than ever before: Nationally, more than half are older than 85, and a vast majority need help with bathing and walking. Close to 50% need help with toileting, according to 2022 data from the National Center on Health Statistics

In Delaware, about 47% of these residents have Alzheimer’s disease or dementia, according to the National Council for Assisted Living.

“The population of people living in assisted living is becoming that of nursing homes,” said Eilon Caspi, a dementia behavioral specialist and professor at the University of Connecticut. “The safeguards, the standards, the regulations, the requirements have not kept up with the realities on the ground.”

Dementia care is the fastest-growing segment of the assisted living sector, yet there’s “great variability” in what goes into this kind of care, Caspi said. It can range from a “locked door and not much more than that to a full culture of care.”

Across the country, he said, the regulations for dementia care in assisted living facilities are weak. Caspi said this gives a “green light to neglect to health care, abuse, financial exploitation and other forms of mistreatment.”

Saundra Hale, Delaware’s long-term care ombudsman, said the most frequent complaint her office receives from families is facilities saying they can no longer care for their loved ones with dementia.

“They feel like facilities that are saying, ‘Oh, we have dementia care, we have these areas and this is what we do’ is false advertisement,” she said.

It’s led to some facilities informing families that they need to hire an aide to care for the loved one, Hale said.

Goonan, whose mother, Alecia LaScala, lived in three assisted living facilities in five years, said a hospital social worker once called 31 Delaware assisted living facilities, seeking care for her mother whose dementia resulted in disruptive behaviors. All denied LaScala.

When Goonan made dozens of calls herself, she said a majority of these places declined to give her a tour, she said, due to her mother’s behavioral issues.

She was told by two facilities that her mother needed a one-on-one aide. Her mother, Alecia, experienced “sundowner’s syndrome,” in which she grew more agitated as day turned into night.

Sunrise Senior Living, Goonan recalled, said Alecia needed an aide to help her around dinnertime when her behavior was most disruptive. Goonan said she and her brother took turns each day. About one month in, the facility told Goonan they couldn’t care for her mother. A spokesman for Sunrise could not be reached for comment.

At Somerford Place, where Alecia lived briefly in 2018, Goonan said she was told her mother needed one-on-one monitoring.

“At that time, I was furious,” she said. “This is ridiculous. What am I paying you for?”

Unseen costs of dementia care

Goonan said she paid out of pocket for private aides, who she said then provided all of her mother’s care. She estimated her family spent over $20,000 in four months for caregivers to attend to Alecia 24 hours a day, seven days a week. This was in addition to the $7,000 she paid monthly for Somerford Place’s memory care facility.

Once, when an aide was running minutes late for her shift, the facility called Goonan, informing her someone needed to sit with Alecia for an estimated 10 minutes, Goonan said. She then drove to the facility to attend to her mother.

Goonan noted that her mother was in Somerford for only about 50 days. The other remaining days her mother was at psychiatric hospitals. The facility admitted Alecia, Goonan said, when staff couldn’t handle her disruptive behaviors.

She also said her family was never given any criteria on how to transition out of needing one-on-one care for her mother.

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Melinda Skirvin, chief wellness officer for Five Star Senior Living, which owns Somerford Place, declined in a statement to comment on specifics related to Alecia’s care, citing privacy concerns.

“As it relates to the need for one-on-one care,” she said in the statement, “each resident is evaluated regularly to determine if changes are needed to maintain their unique care and safety requirements. Recommendations, and adjustments in their Plan of Care are made based on those evaluations.”

Cheryl Heiks, executive director of the Delaware Health Care Facilities Association, said assisted living facilities are “not set up for the kind of care that somebody would get in a skilled nursing facility.”

If a resident needs additional help, she said, the options are either the families pay the facility for more services or they hire an outside aide. She acknowledged that communication needs to be improved between facilities and families.

Yet Mary Peterson, director of the Division of Health Care Quality from 2013 to 2019, said the division during her tenure found and cited facilities for this issue.

With Delaware regulations requiring assisted living facilities to have staffing levels that are “sufficient,” Peterson said these places “hung their hats on” the regulations being vague – a sentiment with which Hale, the ombudsman, agreed.

Peterson said she had originally sought to update assisted living regulations every three years – but failed to “live up to my own goal.” She pushed for an RN to be staffed at an assisted living facility at all hours but “never got anywhere.”

In order for state regulations to be updated, it requires the General Assembly to pass legislation.

“Honestly, at times, when you did try and get things done,” Peterson said, “you received such opposition.”

‘It's kind of like consumer beware’

States have, in recent years, increased oversight and tightened regulations on the assisted living industry.

Paula Carder, director of the Institute on Aging at Portland State University, has analyzed regulations throughout the country, finding that almost every state does it differently.

More than a dozen states, as of her 2017 analysis, had the highest level of regulatory oversight: licensing or certifying dementia care units separate from assisted living regulations.

Some states, including Oregon, have a long list of requirements for building design in an assisted living facility, among its many detailed regulations. A handful have staffing requirements inside its dementia care units. Illinois, for example, requires a certified nursing assistant for every 10 residents.

Others require certain staff employed in these units, in addition to direct support professionals. Arkansas requires a social worker in these units, while 10 others mandate the dementia unit has a separate administrator.

Delaware has none of these requirements.

State regulations spell out general licensing requirements for facilities, circumstances in which someone cannot reside in one of the facilities, as well as rules for infection control, medication management and contracts, among other detailed rules.

Delaware requires assisted living facilities to have a licensed administrator and a director of nursing who is a registered nurse. But there are no certificate or licensing requirements for those who provide direct care. There is required training.

Assisted living facilities also do not need a special license to offer dementia care services.

Delaware, Carder found, is among a cluster of states that requires places to disclose their memory care services. It includes 11 different categories of criteria, ranging from a description of a facility’s resident population to its staffing plan and program costs.

“The state doesn't say OK, ‘If you're doing memory care, here's what memory care means. And here's what you have to do,’” Carder said. “They just say you have to disclose it to people.

“It's kind of like consumer beware.”

One example, Carder noted, is that Delaware facilities have to disclose their physical environment and design features, including security systems. But the state does not specify that a security system needs to be in place on all doors and windows.

Under this model, other than requiring a disclosure plan, Carder said she did not “know what the state's recourse is in terms of oversight.”

Carder also observed Delaware’s language to be vague at times and, in some areas, confused her.

She specifically pointed out Delaware’s dementia care training regulation. The state requires that any facility that provides care to someone diagnosed with Alzheimer’s disease or dementia “shall provide dementia specific training each year to those healthcare providers who must participate in continuing education programs.”

This training, according to the code, must cover communicating with those individuals; their psychological, social and physical needs; and safety measures that need to be taken when caring for them.

Carder said she had difficulty determining who the state considers to be a healthcare provider and who is required to participate in continuing education.

The requirement itself is also unclear, she said. Dementia training could look different at every facility.

‘We need to work together’

One of the most consequential acts of Delaware’s nursing home reform efforts was Eagle’s Law, setting specific staffing ratios for nursing homes.

The legislation has not been updated for decades and makes no mention of assisted living facilities. As of now, there are no specific regulations for memory care units – or even the definition of dementia – in Delaware code.

In 2022, lawmakers proposed a bill that would create ratios for assisted living facilities, mirroring the requirements expected of nursing homes. But the bill got killed following pushback.

How can this be expected of assisted living facilities, industry representatives asked, when there is an ongoing workforce crisis?

Instead, a task force was created. It consisted of lawmakers, state officials, industry representatives and some advocates. There was a noted tension throughout: Some argued state regulations are weak and need to be more robust while others believed more regulations could damage an already hurt industry.

This spring, the legislative task force produced 18 recommendations, some of which resulted in legislation.

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The two most substantive bills born out of the task force, Senate Bill 150 and Senate Bill 151, did not get voted on this year. SB 150 would have required facilities to have a “sufficient number” providing care to dementia residents, as well as providing 12 hours of initial dementia training to staff. SB 151 would require facilities with dementia care units to receive state approval before advertising their services.

New versions are expected to be introduced in January, with the training requirement likely to be less than 12 hours.

Experts had differing opinions on the legislation. Caspi, the UConn dementia researcher, found aspects of SB 150 to be “very concerning.” He noted that the meaning “sufficient” could leave it up to the discretion of assisted living facilities, including those that are low-performing and for-profit.

He added that 12 hours of initial dementia care training is “far from what is needed to adequately understand” and meet the needs of these patients, who might also have additional health issues.

Carder, the Portland State researcher, thought the bills have “incremental” progress. The 12-hour requirement is “fairly common” language, though she noted that the bill did not have a specific number for the continuing education required each year.

Yet long-term care administrators have come out against the proposed bills.

Felisha Alderson, CEO of Kutz Senior Living, told lawmakers in June that the “extensive education requirements” will “pull those employees off the floor for the direct care we need for our residents, especially at a time where we’re having to use agencies rather than being able to hire.”

“It’s not the same type of care that our own employees provide,” said Alderson, who was a member of the long-term care task force.

More and more, nursing homes and assisted living facilities have had to rely on staffing agencies to help fill the gaps in their workforce. Yet many Delaware industry leaders have expressed concern about the quality of care these workers provide.

McCracken, of the LeadingAge Delaware chapter, said training workers for 12 hours before they start work can be a “tough lift” for these facilities, which are desperately looking for qualified candidates.

“We don't want to have staff on the floor caring for residents who aren't properly trained to do so,” he said. “Seriously, we don't. How do we reach the goal and the recommendation of the task force and balance that with the practical situations that our members are dealing with every day?”

The state is set to do a review of current long-term care regulations, which was one of the task force’s recommendations.

Heiks, of the Delaware Health Care Facilities Association, said she believes once this review is done, it will become “more obvious to people what's already existing in our statute, which is this legislation is a repeat of that.”

“Putting more regulations and requirements and oversight on these environments don’t make it a more attractive place to work,” she said.

Heiks fears there could be a “downside” to the addition of more regulations, with some assisted living facilities choosing to not “go into that line of business anymore” – reducing options available to Delawareans.

Some of these points raised by long-term care facilities echo those made in the 1990s in the midst of nursing home reform.

Yrene Waldron, who ran the Delaware Health Care Facilities Association at the time, frequently told The News Journal amid the reform in 1998 that staffing requirements would lead to some facilities closing.

“More enforcement and regulation will not improve long-term care,” Waldron wrote in a 1999 News Journal Op-ed. “Instead we need to refocus government inspection on fixing problems rather than punishing providers.”

Waldron was also director of Arden Courts around this time.

In September 2019, the state appointed her to run the Division of Health Care Quality, which regulates long-term care. She was in the role for less than a year.

Heiks, who now leads the association, believes Delaware is in a different moment of time, facing different challenges than those 30 years ago. She believes there’s “not that much that we are in disagreement on when it comes to providing quality care.”

“We need to work together with the state and our local educational partners and the rest of the healthcare continuum,” she said, “to develop methods and mechanisms to respond to this crisis – and it's a crisis.”

Does your family have an experience with a Delaware assisted living facility? Fill out this form. To contact reporter, Meredith Newman, email her at mnewman@delawareonline.com or call her at 302-256-2466.

This article originally appeared on Delaware News Journal: Delaware assisted living regulations are outdated, vague, experts say