November 17, 2017

Teri Takai
Executive Director
Center for Digital Government
100 Blue Ravine Road
Folsom, CA 95630

Dear Ms. Takai:

My name is Brian Lee and I serve as executive director of Families for Better Care,
a national watchdog group that advocates for improved care and safety for elderly
residents living in nursing homes and other long-term care settings. It is our
organizations understanding that the Center for Digital Government awarded
Floridas Agency for Health Care Administration (AHCA) a 2016 Digital
Government Achievement Award in the Government-to-citizen State and Federal
government category for innovative and citizen-centric websites.

In years past, we would have supported and lauded your decision recognizing
AHCAs trailblazing work. However, as recent media reports show, the Agency
has initiated a near bleach-bit scrubbing of several years worth of nursing home
inspection reports from the award winning FloridaHealthFinder.gov website.
The Agencys puzzling policycoupled with widespread redactions of assisted
living inspection reportsis highly detrimental to consumers who are seeking
critical information about the quality of Floridas senior care homes. As one family
member shared with the Miami Herald, AHCAs unprecedented roll back makes it
difficult for consumers to an make informed choice about long-term care facilities
in Florida.

Families for Better Care has privately and publicly petitioned Agency officials
to reconsider their redaction policy. While we acknowledge that AHCA initially
listened to our concerns, and even responded with some minor tweaks to their
redaction algorithm, the Agency has not yet fully restored the inspection reports. In
an era when families are demanding more, not less, information about nursing
home care and safety, were concerned that Floridas regulatory agency is not only
obstinately refusing to accommodate the peoples wishes but seems to be digging in
on their defense of an unfriendly consumer policy.

Therefore, Families for Better Care is regretfully left with no choice but to alert you
to the Agencys actions and to request that the Center for Digital Government
rescind its awarded Digital Government Award to the Agency for Health
Care Administration.

9600 ESCAR PMENT BLVD., SUITE 74 5-211, A USTIN, TX 7874 9

@_FFBC | W WW.FAMILIESFORBETTERCARE.COM | 850.491.0066
Perhaps the public embarrassment of losing this prestigious award would be the
needed shock to awaken the Agencys organizational conscience about how bad this
policy is for consumers. All we are seeking is the complete restoration of the
nursing home and assisted living inspections as previously published by the
Agency for Health Care Administration to FloridaHealthFinder.gov for years
without concern.

Please feel free to contact me by phone at 850.491.0066 or by email

at info@familiesforbettercare.com if you have any comments or questions regarding
this request. I look forward to hearing from you about your decision.

Respectfully,

Brian Lee
Executive Director

Enclosures (4)
Florida wipes inspections of troubled
nursing homes from its website

November 17, 2017Miami Herald

By Carol Marbin Miller and Caitlin Ostroff

On a good day, Olga Vasquez would dress up in the morning, apply makeup and
stand in the hallway at her Hialeah Gardens nursing home, helping other residents
get in and out of wheelchairs or offering unsolicited advice. On a bad day, her
depression got the best of her and she would remain in bed in her nightgown.
May 31, 2012, was a very bad day.

Vasquez who hadnt seen a psychiatrist in weeks despite instructions to the

contrary hoisted herself out of the window of Room 310, and hurled herself to the
concrete courtyard 39.4 feet below.

This is the type of thing you might want to know about before your mom, dad or
spouse moves into a nursing home. And such documented events were readily
available on the website of state health regulators.

They arent anymore part of the latest erosion in what is supposed to be ready
access to public records in Florida.

A little under three months ago, the state scrubbed its website. No longer can you
go online and view the 83-page report that found Vasquezs death to be the result of
misconduct and that determined other residents of Signature Healthcare of
Waterford were in immediate jeopardy.

The document can still be obtained from the state Agency for Health Care
Administration, although you have to know what to ask for and whom to ask and
you may be required to pay and wait. Online, AHCA now refers consumers to a
separate website managed by the federal Centers for Medicare and Medicaid
Services, though that site does not include as much material as the state previously
provided. AHCA does maintain spreadsheets online that rate homes on a host of
criteria, and allow consumers to compare.

For many years, AHCAs website included links to inspections of nursing homes,
retirement homes and hospitals. They were available with a few keystrokes with
very few redactions. The agency then began to heavily redact the reports
eliminating words such as room and CPR and bruises and pain and
rendering the inspections difficult to interpret for families trying to gauge whether
a facility is suitable for a loved one. AHCA says the redactions were necessary to
protect medical privacy, though patients were identified only by number. Vasquez
was Resident 239.

In the past year, the state spent $22,000 for redaction software that automatically
blacks out words the agency says must be shielded from the public. Those same
words were available on a federal website unredacted. Elder and open-government
advocates said the newly censored detail did more to protect the homes than
patients.

In September, 13 frail elders died miserable deaths at the Rehabilitation Center at

Hollywood Hills in the sweltering aftermath of Hurricane Irma, which knocked out
the homes cooling system. The Miami Herald and other media wrote extensively
about Hollywood Hills troubling regulatory history. And the Herald also reported
on AHCAs decision to heavily redact reports.

Soon after, with no announcement or notice, AHCA wiped its website clean of all
nursing home inspections, shielding the industry to the detriment of consumers.
Im just stunned, said Barbara A. Petersen, who is the president of the First
Amendment Foundation in Tallahassee, an open-government group. Government
serves the people. They are doing a disservice, and one with potentially grave
consequences.

In recent weeks, Petersen needed to find a nursing home for her 96-year-old father
in Colorado. The assisted living facility where he lived had become inappropriate,
and Petersen had only 48 hours to move him.

If I was in that situation here, and I had to do that without the information that
used to be online, Id have to submit a public records request for it. And, as we
know, it takes a long time for them to produce public records. Meanwhile, Id be
stuck with the hardest decision Ive ever made in my life without any information.
We put a tremendous amount of trust in these homes, and we need to make the
best decisions for our families. Honestly, this makes no sense, Petersen added.

A spokeswoman for the healthcare agency said both AHCAs website and the federal
site at Medicare.gov allow consumers to compare homes along a range of indicators,
including quality of life, nutrition, dignity and abuse.

AHCA goes above and beyond Florida law in the amount of information we make
available online, said spokeswoman Mallory McManus. AHCAs website
www.FloridaHealthFinder.gov allows consumers to compare nursing homes by their
inspection rating. Consumers can search by county, Zip code and even by services
offered at every nursing home in Florida. This gives families more information to
make informed healthcare decisions for their loved ones.
In fact, McManus added, in 2016 FloridaHealthFinder.gov won a Digital
Government Achievement Award from the Center for Digital Government in the
Government-to-citizen State and Federal government category, showing that
Florida is a leader in getting information about healthcare facilities to consumers.
FloridaHealthFinder.gov is an excellent tool for consumers, and a national leader in
transparency.

The award was given before the state removed nursing home inspections from
AHCAs site.

The Herald was unable to speak with administrators at the Hialeah Gardens home.

Representatives from the corporate Signature HealthCARE did not return requests
for comment. McManus said health regulators removed the immediate jeopardy
label from the nursing home days after Vasquezs death after administrators
demonstrated they had improved the homes safety. Our Agency expected quick
action to remove the potential risk to others. During a revisit on July 5 [2012], it
was determined that the facility had implemented measures that removed the
threat of serious risk to patients, McManus said.

Our Agency held this facility accountable, and all deficiencies were corrected,
McManus said.

The homes plan of correction included a long list of actions administrators took to
improve safety, including a comprehensive review of all residents medical records,
new policies to ensure doctors orders are carried out, better monitoring of the
symptoms of psychiatric patients, and an audit of records for all patients on mental
health drugs to ensure that they were seen by the psychiatrist as ordered.

Though reports on Vasquezs death are no longer available on AHCAs website or

that of the federal Medicare program a copy of the inspection obtained by the
Herald is heavily redacted. The words neglect and abuse, for example, are
removed from one of the reports findings and the definition of abuse from the
Florida statutes is redacted.

A separate 50-page AHCA report on the same incident recites a portion of Florida
law: [Redacted] means any willful act or [redacted] act by a caregiver that causes
or is likely to cause significant [redacted] to a [redacted] adults physical, [redacted]
or emotional health. [Redacted] includes acts and omissions. The portion is drawn
directly from the states elder abuse law, a public record, and is the definition of
abuse.
AHCAs move is far from the only restriction in what records the public can see. The
Herald wrote about an emergency management plan from the Hollywood Hills
rehab center that was filed with and approved by Broward County, which
included portions that were copied and pasted from a prior year, and failed to say
how residents would be kept cool during a power outage. Broward and Palm Beach
counties then refused to release any plans, though both had originally said they
were public record. Miami-Dade released 54 plans, all heavily redacted.

Vasquez, who migrated to Florida from Cuba, first began to suffer from depression
about a decade before her death, when her husband died, relatives told the Miami-
Dade Medical Examiners Office. Due to her depression, she was placed in the
nursing home, the report said. In addition to depression, Vasquez also was
diagnosed with anxiety, chronic insomnia, heart disease and hypertension.

AHCAs report on Vasquezs death, dated June 14, 2012, said the 82-year-old former
factory worker last saw her primary psychiatrist on March 1, 2012, for treatment of
clinical depression. Staff at Signature never told him, the report said, that
Vasquezs condition had worsened.

Vasquez, the report said, was very depressed at times.

Vasquezs primary doctor had ordered a psychiatric consultation around April 30,
2012. But a constellation of lapses led to the homes failure to ensure Vasquez
actually was treated. The psychiatrist Vasquez was to see left the nursing home, a
report said, and the nurse who was trying to help Vasquez never was told who
would fill in. Meanwhile, a psychiatrist who regularly saw patients on Vasquezs
floor reported he never saw [her] and [she] was not on his caseload.

Complicating matters: there was a 15-day gap in nursing notes in Vasquezs chart,
the report said, and the homes administrator told an AHCA inspector he had no
idea why no notes were made during those two weeks.

AHCA concluded: There was no documentation to demonstrate the [psychiatric]

consultation was completed, as ordered.

Three days before Vasquez died, the report said, she was observed to be sitting in
the hallway or lying in bed; she was not wearing any makeup, and the resident told
[a nurse] she did not feel like doing anything. Vasquez needed help to fill out her
menus.

A short report from the Miami-Dade Medical Examiner said that, on May 31, 2012,
a maintenance worker noticed that the window in Vasquezs room was open. The
widow was found in the courtyard underneath her bedroom window, 14 feet from
the building. The medical examiners office ruled Vasquezs death a suicide.
Six months before Vasquez plunged from her window, the U.S. Department of
Housing and Urban Development faulted the home for failing to maintain the
windows safely. Windows, HUD said, were secured only with screws, and a
corrective action plan required Signature to install window locks within all
residents rooms.

The AHCA report is unclear as to whether the windows in Vasquezs room were
fixed, though an unspecified relative told AHCA she had noticed the day before
Vasquez died that the window clamp was not in place.

A Hialeah Gardens police report confirms some of AHCAs account, noting Vasquez
wasnt breathing by the time she arrived at Palmetto General Hospital. A doctor
pronounced her dead at 4 p.m.

Vasquezs niece, Maria Salgado, who handled Vasquezs affairs, told police she had
been taking 10 medications for her depression, some of which are listed in the
AHCA report, though the names and dosages are largely redacted.

Staff at the nursing home told Salgado that something happened to her aunt while
she was walking in the garden exactly what Salgado was told is redacted
according to the AHCA report.

Salgado, 53, called her aunts death and the ordeal that followed painful to talk
about.

She felt very close to her aunt, she said.

It was such a horrible time, she said. With a long breath, she added, I dont want
to relive it.
Editorial: Protect nursing home
residents, not bad facilities
September 22, 2017 Miami Herald

When they get together in Tallahassee on Friday, the members of Floridas nursing-
home industry can either circle the wagons or lay the groundwork to take a deep,
honest look at how best to confront one of the worst tragedies the industry has seen.

The Florida Health Care Association has called a summit to address emergency
preparedness. This comes after eight, then nine and, as of Thursday, 10 elderly
residents in a Hollywood Hills nursing home were left to suffer and die because they
were in an stiflingly hot facility that lost electricity as Hurricane Irma blew
through.

The industry is rattled by Gov. Rick Scotts emergency rule requiring that all
nursing homes and assisted living facilities have a generator and fuel to keep
buildings cool for four days after losing power.

Its the right call now, and the right call back in 2006, when a similar proposal died
in the Legislature. The industry helped throw it under the bus. And look what
happened.

The Rehabilitation Center at Hollywood Hills had a generator, but not to power air
conditioning, which made it useless as the residents were overcome. It also had a
hospital across the street. But nursing-home residents were never evacuated there,
not until after the first deaths among them.

Nursing home officials, inexplicably, blame Scott for their troubles, whom they
called for help as the situation got worse. The governor had given his cell-phone
number to a group of nursing home owners during a pre-hurricane strategy session.

But in a state report, Scott put the blame where it squarely belongs: This facility is
failing to take responsibility for the fact that they delayed calling 911 and made the
decision to not evacuate their patients to one of the largest hospitals in Florida,
which is directly across the street.

The more we learn about this, the more concerning this tragedy is.

But zoom out from this one particular tragedy, and Floridians will find that, big
picture, the Scott administration as well as industry muscle continue to give cover
to nursing homes that shouldnt be in business.
Time and again, the Legislature and the governor have failed to insist that nursing
homes and ALFs are responsible actors in caring for sick and vulnerable Floridians.
The failed generator legislation is but one example. Pushback against stringent
state monitoring is another.

The Herald now reports that nursing home inspection results are heavily censored,
blacking out unpleasant findings such as bruises, substance, and accidentally.
This means that families looking for a safe facility for an elderly loved one cant get
a full accounting; and troubled families who suspect all is not well in a nursing
home are left with more questions than answers and little recourse.

This is wrong, especially when the state tries to hide behind the federal
governments skirts, alleging that its rules mandate keeping sensitive information
from the public. The truth is, the Herald reports, the state must submit inspection
reports to the federal Centers for Medicare and Medicaid Services, which are
available for public scrutiny uncensored.

The people of this state deserve better than this. The discussion at Fridays summit
cant stop at generators. Industry leaders must far more discussion about meeting
the needs of such vulnerable residents. Why wait for another tragedy?
EDITORIAL: Stop censoring nursing
home inspection reports

March 10, 2017Orlando Sentinel

There are few more consequential or critical decisions for families than choosing the
right nursing home or assisted-living facility for a parent or other elderly relative
who needs long-term care. For those families, Floridas licensing agency for health
care promises some peace of mind: easy access to its information on provider
performance. Such reporting is a key element that promotes enhanced patient
care and consumer choice, according to the website of the state Agency for Health
Care Administration.

But as the Sentinels Kate Santich reported this week, AHCA has not been keeping
its promise on inspection reports for nursing homes and assisted-living facilities,
where more than 160,000 of Floridas most vulnerable residents live. Basic
information dates, places and key details has been blacked out in those
reports.

AHCA officials blamed the redactions on the need to comply with federal health-
privacy laws, which were made more stringent in 2009. But regular followers of the
state inspection reports told Santich that they observed a trend toward withholding
details within the past few months.

And the censored words go well beyond personally identifying medical information,
such as names, Social Security numbers or dates of birth. Those details have always
been exempt from public disclosure requirements.

Santichs story included a passage from one inspection report of a resident in the
bathtub, with the water running, slumped over and -------. Another report referred
to a body floating in the ------.

Nathan Carter, an Orlando personal injury attorney who said he has been
reviewing the reports for 20 years, told Santich that the states redaction process
has become arbitrary and inconsistent. He accused the agency of trying to make
the reports useless by removing substantive information.

Deleting substantive information from inspection reports or, even worse,

withholding them, would make long-term care facilities less vulnerable to lawsuits
alleging abuse or neglect. The daughter of a man who died in 2008 in a Lake Worth
nursing home told Santich she needed the intervention of a state legislator to get
AHCA to release its inspection reports on the facility. The mans family eventually
won a $2 million wrongful death case against the nursing home.
A spokeswoman for AHCA told Santich that the agency is now using an automated
process to redact documents efficiently. She conceded that there is [a] possibility
that some items may be inadvertently redacted. The agency is trying to reduce
this as much as possible, but there is the potential for this to continue to happen.
This is cold comfort to families hoping to find safe places for their loved ones to live,
and to monitor the conditions once a placement has been made. Its also illegal and
unconstitutional. For decades, Florida law has guaranteed citizens access to public
records, and state voters in 1992 enshrined that guarantee in the Florida
Constitution.

On the eve of Sunshine Week, an annual commemoration that spotlights the state
of open government, censored inspection reports for nursing homes and assisted
living facilities are a timely reminder of the need for Floridians and their legislative
representatives, now meeting in Tallahassee for their annual session, to protect the
right to know.

Brian Lee, who served as the states ombudsman for long-term care for seven years,
accused AHCA of blatant disregard of Floridas open-records requirements.
Michael Milliken, the current ombudsman, said he has contacted AHCA about the
problem with the inspection reports, but doesnt have the authority as an employee
of another agency, the Florida Department of Elder Affairs, to change the policy.
Lee, now head of a national watchdog group called Families for Better Care, was
forced out of his state position by Gov. Rick Scott in 2011 after clashing with the
nursing home industry. Lee has offered an eminently reasonable suggestion to
AHCA: Suspend its current automated redaction program until it can come up with
a better system.

If the agency wont comply voluntarily, itll be up to legislators who care about the
health, safety and dignity of Florida seniors to make sure the veil on AHCAs
inspection reports is lifted.
Nursing home inspections leave gaps

March 3, 2017Orlando Sentinel

By Kate Santich

If you want to check on conditions at a Florida nursing home where your elderly
loved one is living, you might be surprised at what you dont find in state inspection
reports that are legally required to be open to the public.
Like dates. Or places. Or pivotal words.

On Sunday morning, one such report reads, --------- at 6:30 a.m., she stated she
entered the residents ---------, found the resident in the bathtub, with the water
running, slumped over and ----------.

The leader of a national watchdog group, Brian Lee of Families For Better Care,
calls the heavily censored reports which cover inspections of nursing homes and
assisted living facilities shocking. He first noticed a difference in the amount of
information withheld late last year.

The state is stripping these reports of critical information that the public would use
to make sense of what is happening, Lee said.

Others are concerned that the problem is part of a pattern of state officials holding
back information on long-term care facilities.

Ive been looking at these reports for 20 years, and I know what they used to look
like and what they look like now, said Nathan Carter, an Orlando personal injury
attorney whose clients have included nursing home residents and their families. It
has become arbitrary and inconsistent what they redact but I think its all part of
a bigger purpose to confuse people and make the reports useless.

The Florida Agency for Health Care Administration, which is responsible for the
reports, denied that allegation, saying state officials are merely trying to provide
additional protection of personal health information as required by federal privacy
laws, which were bolstered in 2009.

Although residents names, Social Security numbers and dates of birth have never
been included in reports made available to the public, AHCA press secretary
Shelisha Coleman said additional information could potentially be used to
independently or in combination with other information identify an individuals
protected health information.
But when asked, she also said such a scenario had never happened and did not say
what had prompted the change, nor when it took place. An email from another
AHCA official dated Dec. 12, 2016, refers to the new redaction process.
Coleman also said her agency has implemented an automated process to redact
documents efficiently and that there is (a) possibility that some items may be
inadvertently redacted.

We are working through our quality assurance process to try and reduce this as
much as possible, but there is the potential for this to continue to happen, she said.

Debbie Dahmer, 56, whose family won a $2 million wrongful death case against a
Lake Worth nursing home, finds that unacceptable. Her father died in 2008 after
entering a Lake Worth nursing home where he was over-medicated, malnourished,
dehydrated and neglected.

Though Dahmers mother won an initial judgment in 2012, the nursing home
appealed and lost three times. Trying to get records from AHCA required the
intervention of a state legislator, she said.

I got nothing from them not even a response, she said. We have the right as
consumers to know. There should be nothing hidden.

The state conducts routine inspections of Floridas 683 nursing homes once a year,
on average, and once every two years for the more than 3,000 assisted living
facilities. But the sites can face additional investigations for serious complaints
including imminent danger to residents. The resulting reports are typically posted
on FloridaHealthFinder.gov within about six weeks, officials said, and the sites
archives date back to at least 2008. For earlier years, consumers can file public
records requests, the site notes.

At Families For Better Care a nonprofit advocacy group dedicated to creating

public awareness of conditions in the nations nursing homes Lee said the state
should suspend its automated redaction program until it can figure out a better
system.

I havent seen anything this blatant, as far as the disregard of the public records
laws, as whats coming out of the Agency for Health Care Administration right
now, he said. And their attitude is very nonchalant, that this is just a computer
glitch. Its crazy and, most importantly, its a disservice to residents and their
families.

As an example, he pointed to a report from a Miami assisted living facility that

reads: On --------- at 3:14 p.m., interview with the detective in charge of Resident
#1s case stated that they received an anonymous call from a person that said there
was a body floating in the ---------.

Barbara Petersen, president of the Tallahassee-based First Amendment

Foundation, called the states reasoning for the redactions absurd.
Medical privacy laws, she said, are intended to protect your personally identifying
medical information, not the bad actions of a facility. My dad is 95 and living in an
assisted living facility, so do I want to know if there are bodies floating in the
whatever? Absolutely.

Coleman said her agency would be willing to process specific requests for
inspection reports but could charge a fee to do so, as state law allows. There also
would be a delay of at least eight business days.

In contrast, the website where inspection reports are posted is free and available at
all times.

Michael Milliken, the states long-term care ombudsman, a position Lee once held,
said he is aware of the issue and has contacted AHCA about it. But Milliken, who
works for the Florida Department of Elder Affairs, said it was not something his
agency could change.

We have reached out to them about it, he said. We always want residents to have
all the information possible, and we know they [AHCA officials] are aware of the
situation.

Carter, the attorney, said he believes the problem goes beyond a simple misstep.
Now theyre redacting substantive information, he said. Its definitely a pattern
and not a mistake.