Long Term Care Facility Access Policy Workgroup Actionable Principles

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature

October 5, 2023

The California State Legislature in 2022 commissioned a workgroup to

“develop recommendations regarding best policies and practices for long-term

care facilities during public health emergencies, including, but not limited to,

visitation policies” (AB 178, Ting, Chapter 45, Statutes of 2022). This report

reflects a summary of the discussions and recommendations of this

workgroup, known as the Long-Term Care Facility Access (LTCFA) Policy

Workgroup.

The California Department of Aging (CDA) will submit this report to the fiscal

and appropriate policy committees of the State Legislature. The Legislature is

expected to consider these recommendations in its policymaking.

Table of Contents

About the Workgroup ....................................................................................... 1

Scope and Definitions ...................................................................................... 3

Recommendations ........................................................................................... 5

1. LTCF Access and Visitation for Resident-Designated

Support Persons ........................................................................................ 5

2. LTCF Access and Visitation for Health Care and Social

Services Providers................................................................................... 16

3. LTCF Access and Visitation for Resident Advocates,

Surveyors, and Others............................................................................. 18

4. Access to Personal Protective Equipment and Other

Emergency Supplies for Visitation ........................................................... 20

5. Process for Grievances and Appeals Related to Visitation

Access ..................................................................................................... 22

6. Ongoing Collaboration Between Key Stakeholders ................................. 24

Summary of Public Comments ....................................................................... 26

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

About the Workgroup

The COVID-19 pandemic has had a devastating global effect, with U.S.

Centers for Disease Control and Prevention (CDC) data showing more than

1.1 million deaths in the United States attributed to the virus from the

beginning of the pandemic in 2020 through August 26, 2023. In an effort to

contain the spread of the virus in long-term care facilities (LTCFs) – where

residents face a higher COVID-19 risk due to the congregate living

environment and their advanced age – federal, state, and local authorities

around the country established limitations on individuals entering the facilities.

These steps limited visitation in LTCFs for extended periods of time, including

some prolonged periods where no visitation was able to occur.

Recognizing this, the California State Legislature has asked the Long-Term

Care Facility Access (LTCFA) Policy Workgroup to collectively put forth

recommendations on how to approach LTCF visitation in states of emergency,

with careful consideration of the impact that restricted access has on the

mental and physical health of residents and patients, families, and friends.

As defined by the Legislature, the LTCFA Policy Workgroup is comprised of

“the California Department of Aging (CDA), the Office of the State Long-Term

Care Ombudsman (OSLTCO), the State Department of Public Health (CDPH),

the State Department of Social Services (CDSS), and stakeholders

representing public health officials, long-term care facility operators and

residents, and consumer advocates.” A full list of organizations included in the

workgroup, representatives for those organizations, and biographies of those

representatives is available on the CDA website; see the LTCFA Policy

Workgroup Member Roster.

The workgroup launched on February 8, 2023, with a meeting to review the

scope of and process for the LTCFA Policy Workgroup. The workgroup then

met four times over the course of five months:

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

To inform the discussions, during Meeting 1 the workgroup:

• Examined research on the importance of LTCF visitation and the impact

of restricted access (see LTCFA Policy Workgroup Research Summary);

• Heard testimonials from residents and their loved ones on the real-life

impact of restricted access during the COVID-19 public health

emergency (PHE) (view recording from Meeting 1); and

• Learned from existing LTCFA laws passed in more than a dozen states

(see LTCFA Policy Workgroup Summary of State Laws).

Based on these inputs, the workgroup over Meetings 2-4 discussed potential

recommendations for policies regarding access to LTCFs during states of

emergency. In these discussions, workgroup members weighed the following

concepts, which were defined in the kickoff meeting:

• Balance, referring to the relationship between the need for public health

protection and the physical health, mental health, and advocacy needs

of residents, their families, their friends, and others during emergencies,

including their individual rights and autonomy;

• Parity, referring to similarities or differences in visitation requirements

that a facility requires for visitors, outside professional staff, and facility

staff;

• Regionalism, referring to differences among regions of California; and

• Equity, referring to the imperative to ensure equity in visitation access,

with consideration for ageism, ableism, and barriers for historically

marginalized communities.

In addition to workgroup discussions, workgroup members provided written

feedback on the recommendations on an ad hoc basis and via four Requests

for Comment sent to members of the workgroup:

• Request for Comment Survey 1: June 19 | Comments

• Request for Comment Survey 2: July 26 | Comments

• Request for Comment Survey 3: August 9 | Comments

• Request for Comment Draft Report: September 22 | Comments

(Summary)

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

Scope and Definitions

This workgroup examined visitation in LTCFs during states of emergency. The

following definitions were used to define the scope of the workgroup and apply

throughout this document.

1. State of Emergency: This workgroup examined LTCF visitation policy

during states of emergency defined as follows: A situation that results in

a declaration of a state of emergency or local emergency, as defined in

Section 8558 of the Government Code, or the declaration of a health

emergency or local health emergency, as described in Section 101080

and that triggers a state or local government order to restrict visitation in

an LTCF. These situations may include, but are not limited to:

a. Disease Pandemics or Epidemics;

b. Natural Disasters;

c. Bioterrorism Emergencies;

d. Chemical Emergencies;

e. Radiation Emergencies;

f. Other Agents, Diseases, and Threats;

g. Power Surge Failures/Blackouts; and

h. Facility Infrastructure Breakdowns.

2. Long-Term Care Facility (LTCF): For the purpose of these

recommendations, the LTCFA Policy Workgroup defined LTCFs as

follows:

a. Skilled Nursing Facilities (SNFs);

b. Intermediate Care Facilities (ICFs);

c. Adult Residential Facilities (ARFs) and Other Adult Assisted Living

Facilities Regulated by CDSS, including ARFs for Persons with

Special Health Care Needs and Enhanced Behavioral Support

Homes; and

d. Residential Care Facilities for the Elderly (RCFEs) and Other

Senior Assisted Living Facilities Regulated by CDSS, including

Memory Care Units and Continuing Care Retirement

Communities.

3. Staff: This refers to any individual employed by, or contracted directly

with, the LTCF and who provides care to residents.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

4. Resident: This refers to a resident or patient of an LTCF.

5. Resident Representative: This refers to an individual who has authority

to act on behalf of the resident, including, but not limited to, a

conservator, guardian, or person authorized as an agent in the

resident’s advance health care directive; the resident’s spouse,

registered domestic partner, or family member, or any other person

designated by the resident to act as a representative; and any other

surrogate decision maker designated in accordance with statutory and

case law.

6. Resident-Designated Support Person (RDSP): This is an individual

selected by a resident or resident representative to provide in-person,

on-site support for the resident. RDSPs may include, but are not limited

to, friends, family, and chosen family.

7. Chosen Family: This refers to individuals whom a resident considers

family but with whom they may not have a legal or biological

relationship.

8. Visitor: This refers to any individuals who enter an LTCF and are

neither a member of staff nor a resident.

9. Compassionate Care: This is defined as visits for an LTCF resident

whose health has sharply declined, who is experiencing a significant

change in circumstances, or who is otherwise suffering. This includes,

but is not limited to:

a. End-of-life and/or hospice care;

b. A situation where the resident has stopped eating or drinking, or is

experiencing significant weight loss;

c. A major change of circumstance, such as a transition to a new

LTCF;

d. Grief, such as grieving the loss of a loved one; and

e. A significant or rapid decline in mental health.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

Recommendations

The sections that follow summarize the discussions and conclusions of this

workgroup across six discrete sections, organized by the key questions that

the workgroup addressed. Each section contains background, principles, and

a policy and practice recommendation, as follows:

• Background: This is a summary of the issue and the discussions of the

workgroup related to this issue.

• Principles: These statements indicate important concepts related to

LTCF visitation that the workgroup jointly seeks to convey to the

Legislature.

• Recommendation: Building on the principles, the policy and practice

recommendation reflect a specific policy and practice recommendation

for the State Legislature to consider in legislative action around LTCFA

policy.

The six sections are defined as follows:

1. LTCF Access and Visitation for Resident-Designated Support Persons

2. LTCF Access and Visitation for Health Care and Social Services

Providers

3. LTCF Access and Visitation for Resident Advocates, Surveyors, and

Others

4. Access to Personal Protective Equipment and Other Emergency

Supplies for Visitation

5. Process for Grievances and Appeals Related to Visitation Access

6. Ongoing Collaboration Between Key Stakeholders

1. LTCF Access and Visitation for Resident-Designated Support

Persons

1.1 Background

Across all workgroup meetings, members of the workgroup explored issues

related to LTCF access and visitation for family, chosen family, and friends.

The following summarizes key themes from the discussion.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

1. The Need for LTCF Access

In Meeting 1, the LTCFA Policy Workgroup looked at existing research to

understand the key roles and benefits of visitation from family, chosen family,

and friends. Through this research and the collective lived experience and

expertise of the workgroup, it identified several key reasons why it is essential

for family, chosen family, and friends to have access to residents, including

during a state of emergency.

Firstly, social contact is essential in preventing residents’ social isolation and

loneliness, which a growing body of research shows has a significant negative

impact on physical, cognitive, and mental health. Even before the COVID-19

pandemic, LTCF residents were at a higher risk for social isolation and

loneliness. For example, a systematic review published in 2020 in Age and

Aging estimated that the prevalence of “severe loneliness” in residential and

nursing care homes was 61%, with studies included in the review reporting a

range from 9% to 81%. Moreover, a 2020 scoping review published in the

Journal of the American Medical Directors Association found positive

associations between social connection and LTCF residents experiencing less

depression, less anxiety, and less cognitive decline.

Personal experiences shared by members of the workgroup and the public

emphasized the importance of visitation from family, chosen family, and

friends. Several workgroup members shared how their loved ones

experienced serious declines in physical and mental health during periods of

restricted visitation. A resident’s loved one told the workgroup about her

husband’s experience of isolation during his facility’s lockdown in 2020, in the

early days of the COVID-19 pandemic. She said, “On our phone calls, I could

tell he was becoming increasingly depressed. He’d say, ‘this is no way to live,’

and he would cry. He had a drastic decline in both physical and mental

health.”

Secondly, research shows that family, chosen family, and friends provide

frontline care when they visit residents of LTCFs. In a study published in

Health Affairs in 2022, researchers analyzed data from national household

and Medicare surveys to understand the role of “informal caregivers,” defined

as family members or any unpaid individuals who provided care to the

resident and who were not paid aides, employees of the LTCF, or other health

or social service providers. It found a high prevalence of receipt of informal

caregiving among residents of LTCFs; for example, 65% of nursing home

residents received informal caregiving for household activities. It also found

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

that informal caregivers provide a significant number of hours of caregiving in

LTCFs. Among LTCF residents who had a need for informal care and reported

receiving it, residential care facility residents received an average of 65 hours

per month of informal care, and nursing home residents received an average

of 37 hours per month of informal care.

Again, these research findings were echoed in the lived experience of

workgroup members, which illustrated the impact of limiting this frontline care

during visitation lockdowns. A Long-Term Care Ombudsman in the workgroup

shared this story of an LTCF resident with dementia: “Prior to COVID, her

husband came to the facility for three meals per day to feed his wife. When the

COVID visitor restrictions were enacted, the husband was only able to watch

through a window as facility staff fed his wife. He watched with dismay as the

staff raced through meals, gave his wife extremely large portions with each bite,

causing her to choke, and ended meals before his wife was finished. Over

several months of the lockout, the resident lost a significant amount of weight.”

Another member of the workgroup shared her experience when she was able to

visit her mother as a result of her extended advocacy efforts. She said, “What I

witnessed as I walked the halls to my mom’s room each day was devastating.

Residents wandering around in various stages of undress, seemingly panicked,

reaching out, crying, help me! Can you please help me? But I couldn’t, you

know, even in head-to-toe NIOSH-approved [Personal Protective Equipment

(PPE)], I had to keep my distance, or I risk everything. If I said something, I

could be kicked out. I’d call for staff; no staff was in sight. Cords were regularly

pulled for hours with no answer. They just weren’t there, there wasn’t enough

staff. With each passing day, I couldn’t help but notice that those people’s

voices, initially ringing so clear, were slowly fading into this eerie silence.”

Thirdly, visitors who do not work for the LTCF have an important role in

identifying issues with resident health and well-being, identifying care issues,

and advocating for care. Testimonials from workgroup members emphasized

the importance of ensuring that someone who does not work for the LTCF is

able to access an LTCF resident in person. One workgroup member shared

an experience that occurred when she was visiting a friend in an LTCF. She

said, “I saw a CNA come out of her room. The CNA was […] picking up meal

trays after dinner. But when I walked into her room, I saw her sitting in her

wheelchair. She was crying; her ostomy bag was leaking all over her, all over

the floor. Her wheelchair was tracking the contents, and she was completely

undressed from the waist down. I had to go find help for her. During lockdown,

I would never have had a chance [to know] that was happening to somebody

that I love or anybody, and it would have never been reported to [CDPH].”

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

Altogether, some early academic research suggests that residents of LTCFs

experienced declines in physical and mental health during periods of limited

LTCF visitation in the COVID-19 PHE. For example, a study published in the

Journal of the American Medical Directors Association by Mathematica

assessed the impact of the pandemic on the well-being of nursing home

residents in 2020 and found that long-stay residents had a 15% increase in

depressive symptoms and a 150% increase in unplanned substantial weight

loss.

2. Designating Visitors

Over the course of Meetings 2-4, the LTCFA Policy Workgroup discussed

which individuals should be prioritized for visitation in a state of emergency in

which a state or local order curtails broad visitation in LTCFs.

The workgroup considered whether to advance recommendations that would

prioritize family, chosen family, and friends as “visitors” or as “support

persons.” The workgroup considered the term “visitor” for these individuals

because it would emphasize that no specific care or support is required for

visitation. However, the workgroup ultimately determined that the term

“support person” would more accurately reflect the important role of such

individuals in supporting the health and well-being of residents. However, the

workgroup emphasized that the term did not establish a requirement for

support persons to provide any specific care or support to achieve this

designation.

The workgroup also discussed the importance of not establishing strict limits

on the number or range of individuals a resident could see over the course of

a state of emergency. Residents, resident representatives, and resident

advocates urged the workgroup to ensure in its recommendations that a

resident’s choice was prioritized and that residents would be able to see

multiple loved ones – such as all their children – over the course of an

emergency. At the same time, facility representatives and public health

officials noted that unrestricted simultaneous access may not be possible in

certain emergencies.

Balancing these two concepts, the group agreed on a recommendation that

would allow residents to identify the individuals of their choice as Resident-

Designated Support Persons (RDSPs), but acknowledged that public health

orders may allow or require facilities to limit the number of RDSPs visiting a

given resident to one at a time.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

In reviewing a draft of this report, some public health officials indicated that

there may also be situations where it is infeasible to allow an unlimited total

number of RDSPs for a given resident over a period of time in a state of

emergency. For example, they indicated there may be situations where the

total number of contacts should be minimized to reduce the risk that a serious

contagious disease will enter a facility. In addition, some facility

representatives noted that staffing and capacity constraints may make it

difficult to allow an unlimited number of visitors over a period of time. They

recommended that the State Legislature consider a mechanism that would

allow a public health order to limit the total number of RDSPs in certain

emergencies when such limitations are needed to ensure public health and

safety. In Meeting 4, the workgroup had considered and opted not to include

in its joint recommendations a limitation on the total number of RDSPs, and

these comments from public health officials are included here for Legislative

consideration.

In addition, during the workgroup meetings and in reviewing the report draft,

representatives of LTCF administrators did raise concerns about the

administrative burden of establishing and maintaining records of RDSP

designations, noting that such requirements could complicate residents’ ability

to see the RDSPs of their choice in a timely manner. These representatives

favored an approach whereby residents could choose their visitors without

establishing an RDSP list, as long as those RDSPs are following the required

protocols. At the same time, the majority of workgroup members noted that it

would be important during a state of emergency for a facility to know whom to

let into the building. Balancing this, the workgroup did not recommend a

specific requirement for how LTCFs track designations as long as LTCFs

could honor resident choice in visitation.

3. Parity and Safety Protocols

In defining the level of RDSP access and protocols for RDSP access to an

LTCF during a state of emergency in which state or local orders curtail broad

visitation, the workgroup considered multiple options, including an approach

where visitor-specific protocols could be established by a workgroup

comprised of key stakeholder groups – including public health officials,

residents, resident advocates, and LTCF administrators – during a state of

emergency. However, the workgroup raised significant concerns about the

administrative burden and delays associated with forming protocols in this way

during an acute phase of an emergency.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

Ultimately, the workgroup agreed on a recommendation in which RDSPs and

LTCF staff would have parity in access to facilities and in safety protocols

required in order to enter facilities and visit with residents. This reflected the

workgroup’s position that RDSPs contribute to the care and well-being of

residents.

Importantly, however, the workgroup did emphasize that RDSPs should be

able to use their own PPE, or other types of appropriate emergency supplies,

as long as such equipment meets or exceeds the standards required by LTCF

protocols and is in accordance with public health orders and guidance.

4. Hours of Visitation

The workgroup discussed whether to establish minimum visitation hours for

RDSPs.

In Title 42 of the Code of Federal Regulations, CFR 483.10(f)(4) states that a

resident of an SNF participating in Medicare and/or Medicaid “has a right to

receive visitors of their choosing at the time of their choosing, subject to the

resident’s right to deny visitation when applicable, and in a manner that does

not impose on the rights of another resident.” In effect, this means that SNF

residents may have visitors, including RDSPs, at any time.

However, these federal regulations do not apply to residents of RCFEs and

other non-nursing facility LTCFs included in these recommendations.

According to California regulations governing RCFEs, residents have the right

“to have their visitors, including [Long-Term Care Ombudsman] and advocacy

representatives, permitted to visit privately during reasonable hours and

without prior notice, provided that the rights of other residents are not infringed

upon.” Similarly, the California regulations for ARFs state that the facility shall

ensure that each resident has the “personal right” to “have visitors, including

advocacy representatives, visit privately during waking hours, provided that

such visitations do not infringe upon the rights of other clients.” As such,

current California and federal regulations do allow some LTCF types to

establish visitation hours, regardless of whether there is a state of emergency,

as long as visitation still occurs.

Although resident advocates in the workgroup endorsed the elimination of

visitation hours for all LTCFs regardless of the state of emergency, the

workgroup’s scope did not extend to LTCF policies outside of a state of

emergency, and it was thus considered outside the scope of this workgroup to

recommend a change in policy on visitation hours. Instead, the workgroup

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

recommended that the rules that govern visitation hours outside a state of

emergency also apply during a state of emergency, meaning that LTCFs

cannot restrict visitation hours because of an emergency.

5. Location of Visitation

The workgroup also discussed the location of visitation, acknowledging that

residents during the COVID-19 pandemic often could not see their loved ones

in their rooms, even when some visitation was allowed.

The workgroup agreed that visitation should generally be able to occur in a

resident’s room. In situations where residents share a room, efforts should be

made to provide privacy and minimize disruption to residents. However, those

efforts should not inhibit visitation; for example, in a situation where both

residents sharing a room do not have sufficient mobility to leave the room,

visits should be able to occur in the room even if both residents are present.

Ultimately, the determination that RDSPs and LTCF staff would have parity in

access to facilities and in safety protocols was considered sufficient to

address this issue because it established parity between RDSPs and LTCF

staff in the locations where they could interact with residents. Therefore, the

workgroup did not develop a specific recommendation specifying the location

of visitation.

6. Compassionate Care Visitation

The workgroup deliberated whether to include a recommendation for

enhanced visitation in situations of compassionate care, which is described in

the “Definitions” section of this document.

During the early days of the COVID-19 pandemic, visitation was largely limited

to compassionate care situations, in accordance with federal guidance from

the Centers for Medicare & Medicaid Services (CMS). Residents and resident

representatives in the workgroup shared how challenging it was to receive

approval for compassionate care visitation and indicated that loved ones were

often denied visitation if residents were deemed to not meet the definition of

compassionate care. One workgroup member shared how difficult it was to

see her husband at the end of his life. She said, “I started calling the facility

and asking and begging for compassionate care visits. And I was again and

again denied daily for the compassionate care visits because they were not

approved by corporate. And I was told that LA County Department of Public

Health wouldn’t approve them. I submitted multiple complaints about this, but

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

to no avail. And it was a nightmare. No one at the facility seemed like it

mattered. It wasn’t clear that they even noticed, nor would they take

responsibility. And I had to stand by helpless as I watched, and listened only

on my bad landline, to my husband declining in health. November eighteenth,

as if they were handing me a gift, I got a phone call saying, we’d like you to

come in for a compassionate care visit, which I greatly appreciated, but [it]

shouldn’t have just been that day, should have happened a long time ago.”

The workgroup determined that it was important to put forth a recommendation

that LTCFs take additional measures to enable visitation for compassionate

care, namely by lifting restrictions on hours of visitation and number of

simultaneous visitors. However, workgroup members stressed that this

recommendation should not in any way diminish general RDSP access to

visitation, regardless of whether the resident needs compassionate care.

Some workgroup members raised concerns about the use of the term

“compassionate care,” noting that it often is associated with end-of-life

situations and that visits of this type should encompass a range of situations in

which a resident’s health or well-being is declining or in which they are

otherwise suffering. However, existing regulations and guidance, including

CMS guidance, use the term “compassionate care” and establish specific

requirements around these visits. Therefore, the workgroup opted to use the

“compassionate care” term but provide a robust definition that was informed

by language used in CMS guidance and laws passed in other states related to

“compassionate care.”

1.2 Principles

Reflecting key takeaways from the discussions summarized above, the

workgroup would like to convey the following principles to the State

Legislature:

1. This workgroup recognizes that family, friends, chosen family, and other

visitors are essential to an LTCF resident’s well-being and should be

considered essential to the resident’s care, including in a state of

emergency.

2. The workgroup emphasizes the importance of resident choice and

considers it important for residents to see the range of visitors they

choose to see, including in a state of emergency.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

3. This workgroup recognizes that certain conditions during states of

emergency may cause legitimate public health or safety risks that may

lead to a state or local order impacting LTCF visitation. In these

situations, the workgroup considers it a priority to ensure that residents

maintain access to family, friends, and chosen family.

4. Building on Principles (1), (2), and (3) above, the workgroup supports

the designation of Resident-Designated Support Persons (RDSPs) who

can provide in-person, on-site support to LTCF residents during a state

of emergency that may impact LTCF visitation as specified in Principle 3

above.

5. LTCFs should enable visitation of RDSPs by establishing hours and

locations of visitation that are accessible and account for the mobility,

accessibility, translation needs, employment hours, travel, and other

reasonable determinants of visitation for each individual resident and

visitors. In general, visitation should be allowed to occur in the area

where the resident lives and/or receives care, although steps should be

taken to promote privacy in situations where residents live in a shared

room. Regardless of a state of emergency, LTCFs should follow existing

federal and state laws related to hours of visitation, as defined in the

Background section above.

6. In situations requiring compassionate care – defined as situations where

an LTCF resident is experiencing a sharp decline in health, is

experiencing a significant change in circumstances, or is otherwise

suffering as a result of lack of visitation – visits from RDSPs are

especially important and LTCFs should take additional measures to lift

any potential barriers to visitation in these situations, which may include

lifting restrictions on the number of visitors at any one time.

1.3 Recommendation

In a state of emergency in which a local or state order may curtail

visitation due to a legitimate public health or safety risk, the workgroup

recommends that Resident-Designated Support Persons (RDSPs) be

able to conduct in-person visits with LTCF residents subject to the same

safety protocols as LTCF staff.

1. In a state of emergency as defined above, LTCF residents or their

representatives can select as RDSPs any individuals who have access

to the facility for visitation as long as they follow required safety

protocols, as defined in (2) below.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

a. RDSPs may include, but are not limited to, any of the following

types of visitors if designated by the resident or their

representative: friends, family, or chosen family.

b. There may not be a limit placed on the number of individuals who

may be selected as RDSPs, and residents may select RDSPs they

wish to see at any time.

c. This recommendation is not intended to establish specific

requirements on the format or processes, written or otherwise,

associated with establishing or tracking RDSPs at the facility level;

it is intended to promote resident choice and provide facilities clear

guidance on individuals who should be admitted to an LTCF as

RDSPs.

2. In a state of emergency as defined above, RDSPs shall be required to

follow the same safety protocols as LTCF staff in order to enter the

facility and cannot be required to follow more stringent protocols than

LTCF staff.

a. Safety protocols are defined as any measures required in order to

protect the health and safety of all individuals during interactions

with residents in the LTCF, in accordance with guidance from

relevant public health and safety authorities. These may include,

but are not limited to:

i. A requirement to don personal protective equipment (PPE)

and to receive education on the effective use of PPE;

ii. A requirement to test for a contagious disease;

iii. A requirement for vaccination against a contagious disease;

iv. A requirement to maintain physical distance between

individuals;

v. A limitation on physical contact; and

vi. A limitation on the locations for interactions with residents.

b. State or local orders may not require safety protocols for RDSPs

that are more stringent than those required for staff.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

c. Where safety protocols require PPE or other types of emergency

supplies, RDSPs may procure and use their own supplies for

LTCF visitation as long as the supplies meet the minimum

standards required in order to follow safety protocols for the

facility, in accordance with public health orders and guidance.

3. In a state of emergency as defined above, there may be two distinctions

in LTCF staff and RDSP access to an LTCF.

a. The number of simultaneous RDSPs who may visit an individual

resident may be limited to as few as one RDSP per resident at any

given time.

i. “Simultaneously” and “simultaneous” are defined as

occurring at the same moment in time; and

ii. This recommendation is not intended to limit a resident’s

ability to have multiple RDSPs over a period of time (i.e., in a

given day), understanding that multiple RDSPs may not be

able to visit simultaneously in the case of a legitimate public

health or safety risk.

b. Hours of visitation for RDSPs must be the same as those required

of an LTCF outside a state of emergency. Those requirements

vary by facility type, subject to existing federal and state law.

4. In a state of emergency as defined above, LTCFs should expand the

number of simultaneous RDSPs and the hours of visitation to enable

visitation in moments when a resident requires compassionate care.

a. Compassionate care is defined as visits for an LTCF resident

whose health has sharply declined, who is experiencing a

significant change in circumstances, or who is otherwise suffering.

This includes, but is not limited to:

i. End-of-life and/or hospice care;

ii. A situation where the resident has stopped eating or

drinking, or is experiencing significant weight loss;

iii. A major change of circumstance, such as a transition to a

new LTCF;

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Recommendations Report for State Legislature | October 5, 2023

iv. Grief, such as grieving the loss of a loved one; and

v. A significant or rapid decline in mental health.

b. The need for a compassionate care visitation may be identified by

any member of the resident’s care team, the resident themselves,

RDSPs, state licensing agency personnel, or the Long-Term Care

Ombudsman.

2. LTCF Access and Visitation for Health Care and Social Services

Providers

2.1 Background

In addition to discussing access and visitation issues for RDSPs, the

workgroup addressed the need for health care and social services providers to

access facilities and provide services to residents.

During the COVID-19 pandemic, health care and social services providers

were not always able to come on-site to provide services to residents in

LTCFs where those providers did not work. Such providers include, but are

not limited to, health care workers, hospice providers, paid caregivers,

personal care assistants, care managers, dentists, social services

providers, financial planners, conservators, and spiritual care providers.

The workgroup agreed that access for these providers is important, regardless

of a state of emergency. In a state of emergency in which a local or state

order may curtail visitation due to a legitimate public health or safety risk, the

workgroup aligned on a recommendation that would establish parity in access

and safety protocols between LTCF staff and service providers who do not

work for an LTCF.

2.2 Principles

Based on the discussions summarized above, the workgroup would like to

convey the following principle to the State Legislature:

1. The workgroup acknowledges that LTCF residents receive critical

services from individuals who do not work in an LTCF and considers it

important that access to those services be maintained during a state of

emergency.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

2.3 Recommendation

In a state of emergency in which a local or state order may curtail

visitation due to a legitimate public health or safety risk, the workgroup

recommends that health care and social services providers not

employed by the LTCF be able to access an LTCF and, when relevant,

conduct in-person visits with LTCF residents, subject to the same safety

protocols as LTCF staff.

1. In a state of emergency as defined above, health and social services

providers not employed by the LTCF may provide services to residents

in the LTCF as long as they follow required safety protocols, as defined

in (2) below.

a. Such providers may include, but are not limited to, health care

workers, hospice providers, paid caregivers, personal care

assistants, care managers, dentists, social services providers,

financial planners, conservators, and spiritual care providers.

b. The need for such services may be identified by residents,

resident representatives, LTCF staff, the resident’s care team, or

other individuals.

2. In a state of emergency as defined above, health care and social

services providers not employed by the LTCF shall be required to follow

the same safety protocols as LTCF staff in order to enter the facility.

a. Safety protocols are defined as any measures required in order to

protect the health and safety of all individuals during interactions

with residents in the LTCF, in accordance with guidance from

relevant public health and safety authorities. These may include,

but are not limited to:

i. A requirement to don personal protective equipment (PPE)

and to receive education on the effective use of PPE;

ii. A requirement to test for a contagious disease;

iii. A requirement for vaccination against a contagious disease;

iv. A requirement to maintain physical distance between

individuals;

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Recommendations Report for State Legislature | October 5, 2023

v. A limitation on physical contact; and

vi. A limitation in the locations for interactions with residents.

b. State or local orders may not require safety protocols for health

care and social services providers not employed by the LTCF that

are more stringent than those required for LTCF staff.

c. Where safety protocols require PPE or other types of emergency

supplies, health care and social services providers not employed

by the LTCF may procure and use their own supplies for LTCF

visitation as long as the supplies meet the minimum standards

required in order to follow safety protocols for the facility, in

accordance with public health orders and guidance.

3. Hours of visitation for health care and social services providers not

employed by the LTCF must be the same as those required of an LTCF

outside a state of emergency. Those requirements may vary by facility

type, subject to existing federal and state law.

3. LTCF Access and Visitation for Resident Advocates, Surveyors, and

Others

3.1 Background

The workgroup also discussed the need to ensure uninterrupted access to

LTCFs for individuals not encompassed in Recommendations 1 and 2 but who

have access to LTCFs through legal, statutory, regulatory, or similar authority.

For example, Title 42 of the Code of Federal Regulations, in CFR

483.10(f)(4)(i)(C), (D) and (F), states that a SNF must provide “immediate

access to any resident” for “any representative of the Office of the State long-

term care ombudsman,” “any representative of the protection and advocacy

systems,” and “any representative of the agency responsible for the protection

and advocacy system for individuals with a mental disorder.”

During some periods in the COVID-19 pandemic, individuals who have legal,

statutory, regulatory, or similar authority to enter an LTCF experienced periods

of restricted access when state and local orders curtailed visitation. The

workgroup agreed that future state and local orders curtailing visitation should

not prevent visitation for these individuals. As with Recommendations 1 and 2,

the workgroup agreed to establish that these individuals have the same access

and follow the same safety protocols as LTCF staff in a state of emergency

where broader visitation is curtailed.

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Recommendations Report for State Legislature | October 5, 2023

3.2 Principles

Based on the workgroup discussion summarized above, the workgroup would

like to convey the following principle to the State Legislature:

1. The workgroup recognizes the importance of the work that resident

advocates, surveyors, licensing agency staff, and individuals in similar

roles conduct in LTCFs, and acknowledges the importance of ensuring

that these individuals have continued access to LTCFs during a state of

emergency.

3.3 Recommendation

In a state of emergency in which a local or state order may curtail

visitation due to a legitimate public health or safety risk, the workgroup

recommends that individuals who have access to enter LTCFs through

legal, statutory, regulatory, or similar authority be able to access an

LTCF and, when relevant, conduct in-person visits with LTCF residents,

subject to the same safety protocols as LTCF staff.

1. In a state of emergency as defined above, individuals who have access

to enter LTCFs through legal, statutory, regulatory, or similar authority

may access the facility and, when required by law or otherwise relevant,

visit with residents in the LTCF as long as they follow required safety

protocols, as defined in (2) below.

a. Such individuals may include, but are not limited to, regulators,

government surveyors, long-term care ombudsmen, patient

advocates, patient representatives, law enforcement officials, and

others.

2. In a state of emergency as defined above, individuals who have access

to enter LTCFs through legal, statutory, regulatory, or similar authority

shall be required to follow the same safety protocols as LTCF staff in

order to enter the facility.

a. Safety protocols are defined as any measures required in order to

protect the health and safety of all individuals during interactions

with residents in the LTCF, in accordance with guidance from

relevant public health and safety authorities. These may include,

but are not limited to:

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

i. A requirement to don personal protective equipment (PPE)

and to receive education on the effective use of PPE;

ii. A requirement to test for a contagious disease;

iii. A requirement for vaccination against a contagious disease;

iv. A requirement to maintain physical distance between

individuals;

v. A limitation on physical contact; and

vi. A limitation in the locations for interactions with residents.

b. State or local orders may not require safety protocols for health

care and social services providers not employed by the LTCF that

are more stringent than those required for LTCF staff.

c. Where safety protocols require PPE or other types of emergency

supplies, health care and social services providers not employed

by the LTCF may procure and use their own supplies for LTCF

visitation as long as the supplies meet the minimum standards

required in order to follow safety protocols for the facility, in

accordance with public health orders and guidance.

3. Hours of visitation for individuals who have access to enter LTCFs

through legal, statutory, regulatory, or similar authority must be the same

as those required of an LTCF outside a state of emergency. Those

requirements may vary by facility type, subject to existing federal and

state law.

4. Access to Personal Protective Equipment and Other Emergency

Supplies for Visitation

4.1 Background

In its meetings, the workgroup discussed the need to ensure access to

emergency supplies – including, but not limited to, PPE, vaccines, and testing

equipment – for RDSPs.

During the COVID-19 pandemic, state, county, and local authorities directed

the distribution of PPE, testing equipment, and vaccines during periods when

these supplies were extremely limited. In doing so, they prioritized certain

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Recommendations Report for State Legislature | October 5, 2023

populations – including LTCF staff and residents – to receive supplies based

on risk factors and job requirements. However, the loved ones of LTCF

residents were not consistently prioritized for these supplies in order to enable

visitation.

Although measures have been taken to improve the standing supply of PPE

and avoid limited access in the future, the workgroup in its discussions

acknowledged that these measures do not eliminate the possibility of

experiencing a period of limited supply of PPE and other emergency supplies.

The workgroup agreed that if this situation were to occur again, RDSPs should

be considered among the priority populations for emergency supplies. This

prioritization would reflect the workgroup’s overall principle that RDSPs are

essential to the health and well-being of LTCF residents.

4.2 Principles

Based on the workgroup discussion summarized above, the workgroup would

like to convey the following principles to the State Legislature:

1. The workgroup considers it essential to include RDSPs among the

priority populations for PPE and other emergency supplies during a

situation in which there is limited access to those supplies, as is already

standard for LTCF staff.

2. The workgroup also seeks to ensure that RDSPs are able to procure

and use their own supplies for LTCF visitation as long as the supplies

meet or exceed the minimum standards required in order to follow safety

protocols.

4.3 Recommendation

In a state of emergency in which the emergency supplies are limited

across the board and in which state, county, and local authorities are

involved in supply distribution, the workgroup recommends that state,

county, and local authorities consider RDSPs to be among the top

priority populations for any emergency supplies required in order to

adhere to LTCF safety protocols.

1. Emergency supplies may include, but are not limited to, PPE,

vaccination, and testing equipment.

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Recommendations Report for State Legislature | October 5, 2023

2. Facilities should provide emergency supplies to RDSPs to the extent

that those supplies are available at the time of visitation and have been

made available to the facility by federal, state, or local entities for this

purpose.

3. Nothing in this recommendation would deprioritize or inhibit access to

emergency supplies for LTCF staff.

4. In case of extreme limitations on emergency supplies, the workgroup

recommends that state, county, and local authorities consider

compassionate care visits to be among the highest-priority situations for

any emergency supplies required in order to adhere to LTCF safety

protocols.

a. Compassionate care is defined in Recommendation 1.

. Process for Grievances and Appeals Related to Visitation Access

5.1 Background

In its meetings, the workgroup discussed the importance of clear

communications and a timely grievance and/or appeals process related to

visitation.

Members of the workgroup shared how, during the COVID-19 pandemic, it

was difficult to understand residents’ rights to visitation. Various federal, state,

and local entities govern rules related to visitation in LTCFs, and there was no

simple source of information for residents and their loved ones to understand

their visitation rights. The workgroup agreed on the importance of ensuring

that clear communication about visitation policies be accessible to residents

and loved ones.

The workgroup also agreed on the importance of a fair and timely grievance

and/or appeals process to ensure the equitable implementation of its

recommendations. Resident advocates specifically emphasized that this

process should ensure a rapid response and resolution of issues to ensure

that RDSP access to residents is preserved. The workgroup acknowledged

that licensing agencies for LTCFs have existing grievance and appeals

processes that may be leveraged and modified for this purpose.

Understanding that additional work is needed to develop the operational

details of a grievance and/or appeals process for RDSP visitation, the

workgroup did not specify whether licensing agencies should develop a new

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Recommendations Report for State Legislature | October 5, 2023

process or modify an existing process for this purpose. Instead, the workgroup

opted to specify what this process should contain and recommend that

licensing agencies develop or modify a process to achieve this outcome.

During Meeting 4, the workgroup expressed concern that the cost of

implementing a grievance and appeals process might impact progress on the

recommendations in this report. Residents and resident advocates in the

workgroup urged that the state adopt a transparent process in developing the

grievance and appeals process related to these recommendations.

5.2 Principles

Based on the workgroup discussion summarized above, the workgroup would

like to convey the following principles to the State Legislature:

1. All policies and practices related to LTCF visitation must be

implemented equitably, with consideration for ageism, ableism, and

barriers for historically marginalized communities.

2. All policies related to visitation must be clearly communicated in a

manner that is accessible to all individuals who may need that

information.

3. To ensure that policies are implemented equitably, residents and their

loved ones must have access to a timely grievance and/or appeals

process to address their concerns and ensure equitable access to

visitation.

5.3 Recommendation

The workgroup recommends that state LTCF licensing agencies provide

clear communication on LTCF visitation standards and an accessible

process for submitting grievances and appeals in situations where

visitation is not made available as defined in this workgroup’s

recommendations.

1. To promote clear communications of policies:

a. State LTCF licensing agencies should clearly post on their

websites, in languages that are accessible to all who may need

the current policies for visitation in LTCFs, the safety protocols that

LTCF staff and visitors must follow, in accordance with

Recommendations 1-3.

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Recommendations Report for State Legislature | October 5, 2023

b. Facilities should clearly post visitation policies in the preferred

languages of their residents and visitors in visible locations within

and outside the facility.

c. Facilities should conduct proactive outreach with RDSPs in their

preferred language to provide timely updates on visitation

protocols.

d. All communications related to visitation – whether by state

licensing agencies or by facilities – must meet accessibility

standards, be written in plain language, and be available in

languages accessible to all who need the information.

2. To promote equitable implementation of those policies:

a. The state LTCF licensing agencies should develop a detailed

process for grievances and appeals within six months of legislative

action on these recommendations, or as soon as practicable. In

doing so, it should:

i. Consult key stakeholders, including residents, RDSPs, and

resident advocates, in the development of the process; and

ii. Release the proposal for public comment prior to finalizing it.

b. The process will include specific timelines for responding to

grievances and appeals.

c. The process should include a method for rapidly responding to a

situation in which an RDSP was not able to visit a resident in

accordance with the policies posted on the state LTCF licensing

agencies’ websites.

. Ongoing Collaboration Between Key Stakeholders

6.1 Background

In its meetings, the workgroup discussed the need for ongoing collaboration in

policymaking related to LTCF visitation.

Some members of the workgroup noted that collaborative policymaking in

which state officials consulted residents and resident advocates on LTCF

visitation was inconsistent during the COVID-19 pandemic. They advocated

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Recommendations Report for State Legislature | October 5, 2023

for a recommendation to promote ongoing collaborative policymaking related

to LTCF visitation during a state of emergency.

6.2 Principles

Based on the workgroup discussion summarized above, the workgroup would

like to convey the following principle to the State Legislature:

1. It is important to ensure that those most impacted by LTCF visitation

policies have input in the development of those policies, even in a state

of emergency.

6.3 Recommendation

In a state of emergency in which a local or state order may curtail

visitation due to a legitimate public health or safety risk, the workgroup

recommends that a representative group of stakeholders be convened at

regular intervals to discuss issues related to LTCF visitation and provide

a collaborative forum for those impacted by the policies to provide

feedback to licensing agencies and other key decision makers.

1. A representative group of stakeholders would at minimum include

residents; resident representatives; resident advocates; long-term care

ombudsmen; LTCF operators and staff; select experts from the fields of

gerontology, geriatrics, and long-term care medicine; the California

Department of Public Health (CDPH); local public health departments;

and the California Department of Social Services (CDSS).

2. The group should represent the diverse needs of the residents in all

types of facilities impacted by these recommendations.

California Long-Term Care Facility Access Policy Workgroup

Recommendations Report for State Legislature | October 5, 2023

Summary of Public Comments

To ensure an open, transparent, and accessible process, all LTCFA Policy

Workgroup meetings were held publicly. Throughout all meetings, members of

the public had the opportunity to provide comments and submit questions.

Members of the public provided feedback on workgroup discussions and the

development of materials through more than 50 comments submitted verbally

and via the written Q&A tool in the workgroup meetings. In Meeting 1,

members of the public emphasized the importance of caregivers and loved

ones visiting residents in person, and the challenges visitors encountered

accessing loved ones during COVID-19. In Meetings 2 and 3, members of the

public voiced concerns about any principle or recommendation that may allow

safety protocols or visitation parameters that are different from those required

for staff and that might restrict visitation.

During Meeting 4, a complete set of draft policy and practice

recommendations were discussed, and public comment was taken

throughout. Members of the public suggested that the workgroup specify that

Resident-Designated Support Persons (RDSPs) be subject to the same safety

protocols and be granted the same access to LTCFs as “direct care staff” for

visitation during a public emergency. Members of the public expressed

support of the workgroup’s final recommendations – which were refined during

Meeting 4 – that outlined the designation of RDSPs, parity in access and

safety protocols, and recommendations to prioritize PPE for RDSPs.

All submitted public comments are available on the LTCFA Policy Workgroup

website.