“By not asking for the data to which we are entitled, we sacrifice our ability to learn what our government is doing. Real transparency is more than waiting for the government to hand out data to us. Real transparency involves demanding data from the government and fighting, if necessary, to force the government to provide it.” – Don Gemberling
Assisted living residences (ALR) is the fastest growing residential care setting for older adults in the United States. It is the home of nearly a million people. Many residents are physically and cognitively disabled. Specifically, between 40% to 50% of ALR residents have a diagnosis of dementia, a substantial portion have extensive need for assistance in activities of daily living (such as bathing, using the toilet, walking, eating, and with medications), and many have serious complex health conditions.
The reality in the ALR sector has changed dramatically over the past few decades since the early days when residents were mostly independent. At the same time, despite largely incremental changes in some states, the regulations that set minimum standards of care and safety in the largely for-profit ALR sector remain weak in many states. In fact, a group of experts recently urged policymakers to “reimagine” the ALR sector given its all too common lack of ability to meet the growing and more complex care needs of residents.
As policy makers consider a major reform in the nursing home sector, it is important not to lose sight of the fundamental and long overdue changes urgently needed in the ALR sector. My review Head in the Sand identified 20 years of warning signs in the ALR sector including research studies, government reports, Senate hearing, and experts’ opinions.
For example, in 2013 Catherine Hawes, who led the first national study in ALR, stated, “assisted living is a ticking time bomb.” She explained, “We’re creating an industry with a million people in it who are becoming more frail, who are poorly regulated by the state…that’s why I talk about it as a ticking time bomb because we’re going to see more deaths, more injuries, and families are going to be so shocked because they think they’ve made a good decision, they think they’ve made a safe decision.” Echoing this concern, researcher Brian Kaskie and his colleagues stated that an “unconscionable number” of ALR residents with dementia experience “neglect, abuse, or harm.”
Another example came in the 2013 PBS Frontline / ProPublica film Live and Death in Assisted Living which identified a series of deadly neglect incidents in the (then) largest for-profit ALR chain in the country (the shares of the chain were traded in the New York Stock Exchange and in 2012 it had nearly $1.6 Billion in revenue). Using more recent data (investigation reports confirming injurious and deadly neglect incidents) from ALR in Minnesota, my look-back review of the film has demonstrated that for many vulnerable and frail residents, the quality of care and safety has not improved since the film aired.
Kristine Sundberg, executive director, Elder Voice Family Advocates (EVFA), in collaboration with elder law attorney Suzanne Scheller, founded the organization with other family members of older adults who were horrifically neglected, abused, and financially exploited in ALR in Minnesota. In reaction to the film, Kristine stated,
“This was filmed in 2013 but could have easily been filmed in 2021. My fear is that it can be replayed without editing in 2031. Understaffing was key then as it is now, but much more serious with the pandemic. Catherine Hawes calls assisted living a “ticking bomb” but it is really an expansive mine field for the residents and their families.”
Kristine knows what she is talking about.
In the fall of 2017, the Star Tribune published a 5-part Special Report called Left to Suffer. Based on multiple Data Practices and FOIA requests, the investigative reporter identified hundreds of cases of abuse, neglect, sexual assaults, and financial exploitation largely in ALRs in Minnesota.
A month after it was released, the commissioner of health stepped down due to mishandling of thousands of mistreatment allegations in ALRs and nursing homes. A few months later, the Minnesota Office of Legislative Auditor (OLA) released a scathing audit report of the MDH’s Office of Health Facility Complaints (the state agency responsible for investigating mistreatment allegations in long-term care homes). The report concluded, “OHFC has not met its responsibilities to protect vulnerable adults in Minnesota.”
In response to one of the report’s recommendations, the new commissioner of health stated, “We strongly agree with the evaluation’s findings regarding better use of complaints and investigation data for prevention.” A couple of years earlier, David Wright, director, Quality, Safety, and Oversight Group, CMS (the federal agency overseeing about 15,000 nursing homes), stated, “What are we accomplishing if we find the same deficiencies every year? We should not be the historians of bad things that happen in nursing homes. We need to be preventive of bad things from happening…. We need more analysis….We need to make sure that everything we do is effective and efficient.”
I couldn’t agree more.
Based on these recommendations, experts’ opinion, and inspired by yearslong work by a citizen advocate Sheila Van Pelt, I submitted Data Practices requests to MDH under the public-friendly Minnesota Government Data Practices Act (MGDPA). The requests enabled me to gain access to several hundred investigation reports substantiated as neglect in ALR across Minnesota. The analysis of these investigation reports (funded by Stevens Square Foundation) culminated in the 2019 report Inhumane and Deadly Neglect Revealed in State Assisted Living Facilities. Along with numerous heartbreaking testimonies by family members whose loved ones were neglected or abused in ALR, the high-profile report was instrumental in the passage of the first ALR licensure in Minnesota during the 2019 legislative session. The licensure strengthens state oversight of ALRs and enhances protections of residents’ rights, quality of care, and safety.
In the words of Jean Greenwood, a survivor of neglect of her mother on the day the ALR licensure went into effect (August 1, 2021), “Many of us are here today because we discovered a truth that not everyone knows—that the quality of care for our elders has often been grievously substandard. Many of us learned this truth the hard way, through personal experience, which led us to fight for assisted living licensure, because we don’t want anyone else to suffer the way our loved ones suffered, as well as we and our families.”
The fact that for at least 15 years MDH routinely de-identified and posted online completed mistreatment investigation reports in ALR not only adheres with the requirements in Minnesota’s statutes but it is a testament to the agency’s increasing commitment to transparency and accountability of care provided in this sector. The agency further exemplifies its commitment when every Tuesday evening my colleagues at EVFA and I receive an email from MDH containing links to completed investigation reports substantiating mistreatment of residents in ALR across the state.
In addition, MDH’s diligence in de-identifying, compiling, and releasing to us the hundreds of investigation reports in a timely manner (beyond neglect, the agency regularly released to us hundreds of other investigation reports confirming abuse, financial exploitation, and theft of opioid pain medications in ALR) demonstrates that the agency does its best to fulfill the new health commissioner’s commitment to, “rebuilding the trust with the victims of mistreatment.” That is, the belief that learning from previous mistreatment cases could inform targeted efforts to prevent harm in similar circumstances.
It also aligns with a basic tenet of a culture of learning, the importance was highlighted in my recent Grand Rounds presentation at University of Connecticut’s Center on Aging: The Role of FOIA in Reduction of Elder Mistreatment in Care Homes.
Then, after moving from Minnesota to Connecticut, I submitted a Freedom of Information Law (FOIL) request to New York State Department of Health (NYS DPH) on October 25, 2021. In the request, I asked to gain access to all completed mistreatment investigation reports (such as abuse, neglect, financial exploitation) substantiated by the agency in Adult Care Facilities / ALR over the past four years.
The positive experience in submitting multiple Data Practices requests over the years in Minnesota didn’t prepare me for my disappointment with the similar process in the state of New York.
A follow up phone call with a senior attorney at the Division of Legal Affairs and Records Access Office of NYS DPH revealed a few disturbing facts. “We just don’t have the manpower,” the attorney said when she explained why the agency is unable to release the mistreatment data to me. She explained that the main challenge is “getting the records” and “redacting” (de-identifying) the investigation reports. She concluded, “Unfortunately, it is too much to compile and redact.”
Despite repeated promises by NYS DPH that the agency will prepare and release a smaller subset of the mistreatment data, more than eight months after my FOIL request, I have yet to receive any data.
In short, the NYS DPH does not routinely de-identify and post online completed investigation reports in hundreds of the state’s Adult Care Facilities / ALR. It is therefore also not in a good position to compile and release them in response to FOIL requests. This, I believe, represents a major gap in NYS DPH’s commitment to transparency, oversight, accountability, culture of learning, and prevention of avoidable harm to vulnerable and frail ALR residents.
While the NYS DPH website dedicated to Adult Day Facilities states, “We make it easy to find quality and safety information on New York’s adult care facilities,” my experience with the agency thus far suggests that significant improvements on this critical front are urgently needed.
But the agency, which went through a tough period during the COVID-19 pandemic, may not be able to do it alone. It needs support that would ultimately enable older New Yorkers to see that critical, if not life-saving, information regarding low and poor performers within the ALR sector will become publicly available and in a timely manner. It is a basic expectation of transparency, the basis for care providers’ accountability and consumers’ informed choice.
Specifically, New York State lawmakers must allocate the necessary resources that will enable the NYS DPH to routinely, efficiently, and promptly de-identify, compile, post online, and release – to the public, researchers, care advocacy organizations, and the media – completed investigation reports confirming the mistreatment of residents in Adult Care Facilities / ALR.
Will the new commissioner of health Dr. Mary T. Bassett (confirmed on January 20, 2021), with her longstanding commitment to improving public health, learning, and prevention of needless harm to vulnerable populations, recognize and act upon the urgent need to bridge this major gap in oversight and accountability of Adult Care Facilities / ALR in the state of New York?
As in the successful case in Minnesota, doing so will enable NYS DPH to shift away from what has been terms “The Freedom from Information” Act to keeping the promise of FOIA.
It could also save lives.