AUGUST 2017

Spotlight

From Home Alone to the
CARE Act: Collaboration
for Family Caregivers

Susan C. Reinhard
AARP Public Policy Institute

Elaine Ryan,

AARP State Advocacy and Strategy Integration

The 2012 report Home Alone: Family Caregivers Providing Complex Chronic Care
broke new ground by uncovering the complex medical/nursing tasks that family
caregivers are performing with little guidance or support. The Caregiver Advise,
Record and Enable (CARE) Act rapidly translated that research into state policies
across most of the nation-with 39 states and territories having enacted it thus far,
in just three years. The swift speed of this policy adoption signals a recognition

by state policymakers of significant unmet family caregiver needs. Now, the Home
Alone Alliance™ is focusing on moving policy into practice by identifying innovative
practices and creating instructional resources for family caregivers and the

professionals who support them.

Introduction

Decades of research document the extensive care and
support that family members, neighbors, and friends
give to people who have long-term or chronic health
needs.' Most of this research, however, focuses on
the personal care and household chores that these
family caregivers provide, such as shopping, cooking,
bathing, dressing, and many other activities of daily
living (ADLs) and instrumental activities of daily
living (IADLs) delineated more than half a century
ago as falling within the family caregiver's inventory
of potential tasks.*

Missing from that inventory has been the complex
care tasks that family caregivers are expected to do,
specifically medical/nursing tasks. Medical/nursing
tasks include managing multiple medications,

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administering injections, performing wound care,
and managing special equipment, among many
others. These tasks are the types of duties that
nurses and other health care professionals were
professionally trained to perform.

In search of a better understanding of the family
caregiver's complete job description, the AARP Public
Policy Institute (PPI) and the United Hospital Fund
(UHF) undertook the first national study of family
caregivers to determine what types of medical/nursing
tasks they perform and how frequently they perform
them. Funded by The John A. Hartford Foundation,
Home Alone: Family Caregivers Providing Complex
Chronic Care (known as Home Alone) was a
nationally representative population-based online
survey that found that almost half (46 percent) of

For more information on this article, please visit the Public
Policy Institute Web site. To learn more about the Home
Alone Alliance™, visit www.aarp.org/nolongeralone.
AUGUST 2017

family caregivers perform these tasks. Home Alone
brought widespread attention to the huge gap between
what family caregivers are expected to perform and
the instructions and guidance provided to them. It
documented their fears of making a mistake or hurting
their family members.° By putting a spotlight on these
significant unmet needs, this research tapped into
something powerful in the lives of millions of family
caregivers across the country.

Translating Research into State Policy
across the Nation

Home Alone is a powerful example of research driving
policy and ultimately transforming practice. When

it was released in October 2012, the reaction from
researchers, the media, and advocates was immediate
and widespread. The term "medical/nursing tasks"
put a name on something that people understood at

a personal level. They were either doing these tasks
themselves, or they knew someone else who was
expected to do them. They had their own stories, their
own experiences. And they were relieved to know
they were not alone, that there was validation of the
complexity of their work, and that their anxieties

in doing the clinical work that professionals do was
shared by other family caregivers.

This strong reaction to the Home Alone report
findings from such a broad base of individuals and
organizations was a call to action to provide greater
supports for family caregivers and those they care
for. With repeated input from caregiver organizations
and experts at the state and national levels, the AARP
State Advocacy and Strategy Integration (SASD
team translated the Home Alone findings into model
state legislation in the form of the Caregiver Advise,
Record, and Enable (CARE) Act. In May 2014,
Oklahoma became the first state to make the CARE
Act law. Less than three years later, it is law in 39
states and territories as of July 2017. Several other
states continue to consider it in 2017 (see Figure 1).

When developing the CARE Act model bill,

AARP focused on the need to acknowledge the
critical role of family caregivers who are on the
front lines of the health care team, yet have little
knowledge of how to perform the wide array of
complex tasks they are asked to perform in the
home. It put in place simple rule changes in hospital

admission and discharge practices. Specifically,
AARP targeted three key areas for change. First,
caregivers need more visibility, not only during the
admission process, but also throughout the family
member's hospital stay. Second, family caregivers
need adequate notice prior to the hospital discharge
so that they can purchase the necessary medical
supplies and food, arrange time off from work

or arrange care if needed, and make other home
preparations. Third, family caregivers need simple
instruction on the medical/nursing tasks they will
be performing at home. Family caregivers are often
handed paperwork on discharge day with little or no
explanation of the actual tasks.

The CARE Act was specifically crafted to address

the gap between what professionals expect family
caregivers to do and what guidance they receive to get
it done. While the specific provisions of the law vary
from state to state, the CARE Act generally requires
hospitals to provide patients (of any age or diagnosis)
an opportunity to identify a family caregiver. If

the patient identifies a caregiver, that individual's
name and contact information is recorded in the
hospital's health record. The hospital is required to
notify the family caregiver as soon as possible when
the individual will be discharged or transferred to a
facility (such as a nursing or rehabilitation facility)-
and offer consultation about the discharge plan and the
caregiver's role in that plan.

Most important, the hospital must offer the

family caregiver instructions on how to perform

the medical/nursing tasks that are included in

the discharge plan and answer questions about
those tasks. A family caregiver can be a relative,
neighbor, partner, or friend-anyone the patient
identifies as the person(s) who will be assisting with
care post-discharge, particularly medical/nursing
tasks. Patients are not obligated to identify anyone
as their family caregiver, and individuals are not
obligated to perform these tasks if designated as the
family caregiver. Rather, the CARE Act requires
hospitals to make sure patients and families have
the opportunity to receive the information and
instruction they need to ensure smooth hospital
discharges and care transitions.
AUGUST 2017

FIGURE 1
States with the CARE Act Enacted or under Consideration, July 2017

  
  

WASHINGTON D.C

1

PUERTO RICO

j
a

U.S. VIRGIN ISLANDS

ij

ae CARE Act now Law

 

CARE Act goes into effect: a CARE Act Passed by Legislature
Oklahoma, 11/5/14; Colorado, 5/8/15; New Jersey, 5/12/15; West Virginia, 6/8/15; New Mexico, 6/17/15;

Mississippi, 7/1/15; Virginia, 7/1/15; Arkansas, 7/22/15; Connecticut, 10/1/15; Nevada, 10/1/15; Maine, . .

10/15/15; Puerto Rico, 12/31/15; California, 1/1/16; Indiana, 1/1/16; New Hampshire, 1/1/16; Oregon, || CARE Act Introduced or Regulations in Process
1/1/16; Illinois, 1/27/2016; Utah, 2/10/16; Nebraska, 3/30/16; Virgin Islands, 3/30/16; New York, 4/23/16;

Washington, 6/9/16; Wyoming, 7/1/16, Washington D.C., 7/6/16; Michigan, 7/12/16; Louisiana, 8/1/16;
Maryland, 10/1/16; Alaska, 1/1/17; Delaware, 1/1/17; Minnesota, 1/1/17; Rhode Island, 3/14/17; Ohio,
3/20; Pennsylvania, 4/20/17; Kentucky, 6/29/17; Hawaii, 7/1/17; Montana, 10/1/17; Kansas, 7/1/2018;
Massachusetts, TBD; Texas, TBD

 

 

 

**Updated on 6/10/2017
Not surprisingly, the CARE Act's focus and spirit Republican senator who had a personal experience
have resonated with people. In AARP survey with family caregiving for his father. Indeed, the

research conducted at both national and state levels, majority of the bill sponsors of the CARE Act across
the results consistently have shown strong bipartisan the country were moved to introduce the legislation

support for the CARE Act provisions, and those because they considered it to be a common sense
findings have bolstered efforts to move forward in solution to provide some basic supports to family
the states.' The CARE Act became the centerpiece caregivers. In New Jersey, the bipartisan group of
of a multiyear, multistate, and multifaceted Family sponsors included the speaker of the assembly, who
Caregiving campaign within AARP. made the bill a priority. Because of these strategies,
AARP state offices in Oklahoma and New Jersey both bills received near unanimous approval by the
established the strategic foundation for enacting the states' legislative bodies.

CARE Act. Each office secured strong legislative Also indicative of the legislation's resonance, strong
sponsors, engaged members in advocacy, and used media coverage helped advance the CARE Act in
the personal stories of volunteers who shared how each state as well. The "PBS News Hour" covered
they could have benefited from the CARE Act. the Oklahoma consideration of the bill, featuring
In Oklahoma, the CARE Act was sponsored by a family caregivers in Oklahoma who struggled with
AUGUST 2017

providing complex care for their family members.®
In New Jersey, state publications repeatedly ran stories
about the need for and value of the CARE Act.'

The enactments in 2014 sent a strong signal to
states around the nation that the CARE Act could
bridge the partisan divide to set in statute certain
common sense supports for family caregivers. In
2015 advocacy by AARP state office staff and
volunteers resulted in the enactment of the CARE
Act in an additional 17 states and territories; 16
more states followed in 2016, for a total of 35 states
and territories in two years. Thus far in 2017, four
more states joined in this state-by-state national
movement, bring the count to 39 in three years.

It is rare for research to diffuse into policy across
more than two-thirds of America in such a short
time. Policy usually moves more slowly. Several
factors played into this rapid movement. First, the
research made sense to people: "Yes, this is a big
problem for me and/or for many people I know."
Second, the simplicity of the legislation to clearly
meet the newly revealed, substantiated unmet
needs of family caregivers was significant. The
common response was "Really, this isn't already
required?" And the honest answer was "No." Third,
the passion of volunteer advocates was unrelenting
at a local level, where the policy makers live. And
finally, this was never seen as a political or partisan
issue. It was seen as an "every person" issue.

It is also important to emphasize that the
development of the CARE Act was a collaborative
process in every state. AARP state offices sought
input from and worked closely with a wide
network of stakeholders. Depending on the state,
this collaboration involved legislators, disease-
specific advocacy groups such as the Alzheimer's
Association, the American Cancer Society's Cancer
Action Network, aging services providers, nursing
associations, and state hospital associations. These
stakeholders helped to tailor the bill language to fit
the state environment. In some states, the hospital
association initially opposed the bill and would

not join discussions. Typically, they claimed, "we
already teach family caregivers, so there is no need
for this bill." But thanks largely to the strong and
persistent voices of consumers who were eager to

tell their personal stories to their state legislators,
their thinking evolved. And, indeed state legislators
themselves drew from their own personal
experiences as family caregivers. Moreover, in
many other cases, the hospital associations saw

an opportunity to recognize the contributions of
family caregivers, showcase the promising practices
of their member hospitals that were already
supporting caregivers, and bring all hospitals in the
state up to a new standard of care.

As aresult of this close collaboration, each state's
CARE Act is unique. While the core provisions-
recognition, notification, and instruction-remain
largely intact, each of the resulting laws employs
language customized to best meet its own regulatory
and political environments. For example, several
western states (Oregon, Washington, Hawaii, and
Alaska) took a similar approach. They minimized the
bill language, set forth clear objectives that hospitals
must meet, and gave hospitals the discretion to
develop policies to meet those objectives.

In a creative deviation, Utah did not take the
legislative route to implement the CARE Act,
instead implementing it through administrative
action. In doing so, AARP Utah worked closely
with officials at a state agency, the state hospital
association, and other stakeholders to develop
regulatory language. The rule was drafted, opened
for comment, and finalized in 2016. Other states
are starting to see value in this approach and two
(Arizona and Tennessee) are currently developing
regulations for promulgation.

Many of the changes to the model bill have been
enhancements to the original language. For example,
the New Jersey CARE Act provides flexibility for
family caregivers to select whether they want to
receive a live demonstration or view an instructional
video. It also requires the hospital to provide a
phone number for the caregiver to call for additional
information after they go home. And in Delaware,
the bill specifically ties the recording of the
caregiver's name to the patient's electronic medical
record and the state's Health Information Network.

With additional states continuing to pursue the
enactment of the law in 2017, the CARE Act
continues to stand as the centerpiece of a multiyear,
AUGUST 2017

multistate family caregiving effort. And in those
states that already have the law in place, AARP

and other stakeholders are working to ensure that
the laws are effectively implemented; that family
caregivers, providers, and regulators are aware of the
CARE Act; and that they know how to utilize it and
ensure the benefits of a transformative new policy
that sprang forth from the Home Alone report.

Moving from Research and Policy

to Practice

Given the rapid translation of research to policy, the
Public Policy Institute is moving forward on three
fronts to accelerate changes in practice:

e Conducting a national scan of how states,
hospitals, and health systems implement the
CARE Act to uncover innovative and promising
practices

e Developing consumer-friendly, evidence-based
resources for family caregivers and the clinicians
who support them, particularly instructional
videos

e Creating the Home Alone Alliance™ to spark
widespread culture change

These three collaborative initiatives are closely
intertwined and are intended to leverage the
expertise and actions of many family caregiving
experts, thought leaders, and organizations. They
are also focused on rapid diffusion of innovation at
the system and local levels, where family caregivers
often both experience their challenges and seek help.

Scanning the States for Innovation

The CARE Act legislation creates an opportunity
for hospitals to integrate the support of family
caregivers throughout their systems. In many cases,
there is a need to change how professionals interact
with family caregivers. While the goal is to change
practice across settings, the CARE Act focuses on
hospitals and health systems.

In the fall of 2016, the Public Policy Institute
began a national scan of the implementation of the
CARE Act. Based on recommendations from a
distinguished group of advisers, research teams led
by nurse researchers conducted pilot site visits in
several hospitals in New Jersey and New York to

gain a better understanding of how health systems
implement the tenets of the CARE Act into hospital
policies and change practice. Simultaneously, the
AARP SASI team collaborated with AARP's state
offices to determine how state governments provide
oversight and how consumers learn about their rights
under the law.

The goal is to conduct a full national scan focusing
on implementation strategies and to identify and
rapidly disseminate innovative and promising
practices. By conducting on-site interviews with a
cross-section of hospital staff and family caregivers,
the Public Policy Institute's research teams are
developing qualitative information on challenges,
learnings, and potential promising practices. There
is a strong focus on the need to address multicultural
family caregiving and implementation issues in
rural and urban settings as well as academic and
community hospital environments. Interviews

will also be conducted with key state stakeholders
(e.g., AARP state offices and other consumer
advocacy organizations, professional groups,
hospital associations). These conversations will help
achieve a clearer and more holistic view of the law's
implementation across the state, assess stakeholder
awareness of the CARE Act, and potentially identify
opportunities for further stakeholder engagement
with the law moving forward.

Early learnings from the 2016 pilot site visits
include the following:

e Multiple hospital staff and leadership
reported that while they initially thought "we
already do what the CARE Act requires,"
the implementation process allowed them to
standardize how their respective hospitals
interact with family caregivers throughout the
discharge process.

e Individual hospitals and health systems have begun
certain processes or initiatives that show promise
and could scale nationally. One hospital, for
example, expanded its call center capacity to create
a 24/7 toll-free line for family caregivers to call for
support post-discharge. Registered nurses staff the
phones and either provide support immediately or
forward requests to expert nurses or physicians and
follow up with caregivers in short order.
AUGUST 2017

e One hospital provided insight into the training
need for hospital registrars who begin the
admission process to differentiate among the

"next of kin," "guardian," or "family caregiver"

who may be the same person or two or three

different people. The CARE Act is directed to the

person who will be giving the actual care.

In addition to publishing and broadly communicating
promising practices that could fuel both expedited
and high-quality implementation across the nation,
this scan seeks to inform interdisciplinary training
for health system professionals on identifying,
communicating, instructing, and supporting family
caregivers throughout a hospital stay and when they
are back in the community.

Developing Tools for Family Caregivers
After an extensive search for resources that help
guide family caregivers on how to perform a range
of complex medical/nursing tasks, the dearth

of such help became evident. In collaboration
with the Betty Irene Moore School of Nursing at
the University of California, Davis, the United
Hospital Fund, and the Family Caregiver Alliance
(the "founding partners"), we convened experts

in the fields of family caregiving, instructional
technology, adult learning, and clinical practice.
The consensus was that there was a need for a set
of guiding principles for developing instructional
videos for family caregivers as a starting point.

Focus groups with family caregivers revealed how
family caregivers say they learn best through video
instruction, providing "dos and don'ts" for how to
create video resources.'° Based on these guidelines,
we developed a pilot series of videos focused on
helping family caregivers learn how to administer
medications, including injections.'' These videos
emphasize caregivers seeing themselves learning
how to perform a task, rather than seeing only a
professional demonstrating it. They capture the
sense of anxiety that lay people experience, but
emphasize empowerment in learning how to do
what they will be doing for their family member.
The videos also feature depictions of multicultural
caregivers learning in both hospital and home
settings. In March 2017 we released a second video
series instructing family caregivers on mobility

tasks, in partnership with the US Department of
Veterans Affairs.'? In an effort to provide culturally
competent resources, most of the videos are
available in Spanish, and these in-language videos
reflect Hispanic cultural norms.

Going forward, through the support of the Home
Alone Alliance™ discussed below, the goals include
the following:

e Collaborating with members of the Home
Alone Alliance™ to produce several series of
instructional videos to include more on medication
administration, wound care, peritoneal dialysis,
and other medical/nursing tasks

e Producing videos that feature male caregivers,
millennials, and other under-represented
caregivers; 40 percent of caregivers are men and
one in four are millennials"

e Prioritizing a multicultural focus with in-
language productions, particularly in Spanish

e Collaborating with schools of nursing and other
disciplines to adapt these videos for training
professionals to better instruct and support
family caregivers providing complex care

Creating the Home Alone Alliance™ to
Spark Culture Change

In December 2016 the Public Policy Institute
formally launched the Home Alone Alliance™ in
collaboration with its founding partners (Figure 2).
The HAA brings together collaborators from the
public, private, and nonprofit sectors as a catalyst
for change in the way health care organizations and
professionals interface with family caregivers.

As the hub of research, outreach, convenings, and
resource development, the HAA will be a focal point
for coordination, idea generation, and collaboration
among stakeholders committed to supporting family
caregivers engaged in complex care (Figure 3).

Between the initial Home Alone report, the success
of enacting the CARE Act in more than two-

To learn more about the Home Alone
Alliance® and to access the instructional

videos, visit www.aarp.org/nolongeralone.
AUGUST 2017

FIGURE 2
Home Alone Alliances" Members

American Journal of Nursing

Atlas of Caregiving

Betty Irene Moore School of Nursing at UC-Davis
Center to Advance Palliative Care
Coalition to Transform Advanced Care
Easterseals

Family Caregiver Alliance

Hartford Institute for Geriatric Nursing
Home Instead Senior Care

The John A. Hartford Foundation
National Alliance for Caregiving
National League for Nursing

Nurses Improving Care for Healthsystem Elders
(NICHE)

NYU Rory Meyers College of Nursing
Rosalynn Carter Institute for Caregiving
United Hospital Fund

US Department of Veterans Affairs

FIGURE 3
The Home Alone Alliance's®" Work

HOME

ALONE
ALLIANCE",

stele S
DEVELOPMENT

 

thirds of the country in a short period of time,

and creating an initial set of resources for family
caregivers, AARP and its colleagues have made
significant advancements in supporting family
caregivers who perform complex medical/nursing
tasks. But there is still more work to be done.

We need to attain a better understanding of how
health systems are implementing the CARE Act,
for example, to identify and diffuse promising
practices, to inform training of nurses and other
clinicians, and to see where gaps remain. In
addition, there is still much to learn about the broad
range of family caregivers who perform complex
medical/nursing tasks. Finally, we need to continue
to further develop and refine resources, including
instructional content, that directly support family
caregivers performing these complex tasks.

By meeting each of these needs, the Home Alone
Alliance™ seeks to improve care for individuals
supported by family caregivers. Through
integrating research and resource development and
supplementing these with convenings and outreach,
the HAA intends to catalyze sustainable change

in how professionals in health systems interact
with and support family caregivers, especially
those performing complex medical/nursing tasks.
The network of the current 15 HAA members

runs deep into environments and systems that
reach clinicians, providers, educators, family
caregiver organizations, faith-based communities,
multicultural communities, and policymakers. This
alliance is committed to fueling a national culture
change in how to better support those who are the
very core of health and long-term services and
supports-family caregivers.

Acknowledgments: The authors gratefully
acknowledge the substantial contributions
of many of our colleagues to this Public
Policy Institute Spotlight. We are especially
grateful to Rita Choula, Brendan Flinn,
Jean Accius, Lynn Friss Feinberg, Jordan
Green, Julie Alexis, Ilene Henshaw, James
McSpadden, and Glen Fewkes.
AUGUST 2017

1 Freedman, V. A., and B. C. Spillman, "Disability and Care
Needs among Older Americans," Milbank Quarterly 92,
no. 3 (2014): 509-41.

2 Bakas, T., J. K. Austin, S. L. Jessup, L. S. Williams, and M.
T. Oberst, "Time and Difficulty of Tasks Provided by Family
Caregivers of Stroke Survivors," Journal of Neuroscience
Nursing 36, no. 2 (2004): 95-106.

3 National Academies of Sciences, Engineering, and
Medicine, Families Caring for an Aging America
(Washington, DC: The National Academies Press, 2016).
doi: 10.17226/23606.

4 Reinhard, S., "The Work of Caregiving: What Do ADLs and
IADLs Tell Us?," in Family Caregivers on the Job: Moving
beyond ADLs and IADLs, edited by Carol A. Levine (New
York: United Hospital Fund of New York), 37-65.

5 S. Reinhard and C. Levine, Home Alone: Family
Caregivers Providing Complex Chronic Care, AARP
Public Policy Institute, October 2012, http://www.aarp.org/
home-family/caregiving/info-10-2012/home-alone-family-
caregivers-providing-complex-chronic-care.html

6 S. Reinhard and C. Levine, Home Alone: Family
Caregivers Providing Complex Chronic Care, AARP
Public Policy Institute, October 2012, http://www.aarp.org/
home-family/caregiving/info-10-2012/home-alone-family-
caregivers-providing-complex-chronic-care.html

7 AARP Research surveyed voters in several states, all of
whom expressed strong support for the CARE Act. Recent
examples of these surveys include those for Hawaii, lowa,
Massachusetts, Missouri, Nevada, South Dakota, and
Washington.

8 "Easing the Burden of Long-Term Medical Demands for
Family Caregivers," PBS Newshour, April 2014, http://
www.pbs.org/newshour/bb/advocating-care-home-
caregivers/

9 Livio, S., "N.J. Legislature Approves Bill Requiring
Hospitals to Teach Family How to Care for Discharged
Patients," September 2014, http:/Awww.nj.com/politics/
index.ssf/2014/09/nj_hospitals_would_have_to_teach_
family_how_to_care_for_patient_after_hospital_
discharge.html

10 S. Reinhard and C. Levine, "It All Falls on Me," AARP
Public Policy Institute, September 2016, http://www.
aarp.org/content/dam/aarp/ppi/2016-08/AARP1078 _
FamilyCaregiver_SpotlightSep6v5.pdf

11 S. Reinhard, et al., "Family Caregiver's Video Guide to
Managing Medications," AARP Public Policy Institute,
2016, http:/www.aarp.org/ppi/info-2016/family-caregiver-
video-guide-to-managing-medications.html

12 J. Graham, "Video Help Is on Way for Family Caregivers
Who Must Draw Blood or Give Injections," Kaiser Health
News, 2016, http://khn.org/news/video-help-is-on-way-
for-family-caregivers-who-must-draw-blood-or-give-
injections/

13 S. Reinhard and G. Hunt, Caregiving in the United States
2015, AARP Public Policy Institute, 2015, http:/Awww.aarp.
org/ppi/info-2015/caregiving-in-the-united-states-2015.
html

I
Spotlight 28, August 2017

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