About this Series

This Spotlight is part of the AARP
Public Policy Institute’s LTSS Choices
initiative. This initiative includes
aseries of reports, blogs, videos,
podcasts, and virtual convenings that
seeks to spark ideas for immediate,
intermediate, and long-term options
for transforming long-term services
and supports (LTSS). We will explore a
growing list of innovative models and
evidence-based solutions—at both the
national and international levels—to
achieve system-wide LTSS reform.

We recognize the importance of
collaborating and partnering with
others across the array of sectors,
disciplines, and diverse populations
to truly transform and modernize

the LTSS system. We invite new ideas
and look forward to opportunities for
collaboration.

For all questions and inquiries,
please contact Susan

at LTSSChoices@aarp.org.

 

Introduction

As the COVID-19 pandemic reshapes long-term care in
America, an increasing number of older Americans are relying
on family members to provide the care they need, allowing
them to live safely at home. While this shift offers an option for
families, it also puts households under financial, emotional,
time-related, and other types of strain. In essence, these family
caregivers are often performing the tasks of paid professionals
who work both in nursing facilities and through in-home visits.

Paying family members to provide care is a cost-effective
option with unique advantages that help ensure a rapidly aging
American population can receive the care needed to live at
home.

Background

Family caregivers’ value in terms of dollars has been well
documented. The total economic value of unpaid family
caregiving was estimated at approximately $470 billion in of
2017, and this number will only increase as more Americans
than ever are turning 65 and older.'? And now, as the COVID-19

Pe
Susan Reinhard et al., “Valuing the Invaluable: 2019 Update,” AARP Public Policy Institute, Washington, DC, November
2019, https://www.aarp.org/content/dam/aar| i/2019/11/valuing-the-invaluable-2019-update-charting-a-path-

 

forward.doi.10.26419-2Fppi.00082.001.pdf.

2Mark Mather, Paola Scommegna, and Lillian Kilduff, “Fact Sheet: Aging in the United States—Population Reference
Bureau,” Population Reference Bureau, Washington, DC, July 11, 2019,
https://Awww.prb.org/aging-unitedstates-fact-sheet/.

 

1|

© 2021 ALL RIGHTS RESERVED |
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

pandemic reshapes long-term care in America, family caregivers’ contributions are growing in unique
ways. An increasing number of older people and adults with physical disabilities are relying on family
members for the care they need, allowing them to live safely at home. Yet, while this shift offers

an option for families, it also adds financial, emotional, and time-related strains on households. In
essence, these family caregivers are often performing the tasks of paid professionals who work both in
nursing facilities and through in-home visits—and in some cases, these tasks are even taking away from

caregivers’ own needed work hours.

One solution is to provide some level of compensation to family caregivers—compensation that might
otherwise go to nursing facilities or home care workers. The concept certainly resonates with family
caregivers. In one recent national study (completed before the onset of the COVID-19 pandemic), a

majority (65 percent) of family caregivers of
adults said they would find a program under
which they were paid for at least some of their
caregiving hours to be helpful. Those who
were in high-intensity care situations and those
reporting moderate-to-high levels of financial
strain were especially supportive of being paid
for some of the hours of care they provided

(76 percent and 74 percent, respectively).*

The difficulty of managing a highly contagious
disease—COVID-19-in institutional settings

has generated new public scrutiny toward

the nation’s existing long-term services and
supports (LTSS) system and galvanized national
interest in improving it. As shown in this
report, paying family members to provide

care is a cost-effective option with unique
advantages that can help ensure that older
people and people with disabilities with LTSS
needs receive the care they need, from the
caregivers they prefer, and in the home setting.
Investing in paid family caregiving will also
help states adapt their LTSS systems to better
meet rising levels of need in a cost-effective
way.

Creating systemic change in LTSS requires
changes in Medicaid policy, because Medicaid
is the primary funder of LTSS in the United
States.* Thus, this report will focus primarily on
paid family caregiving that takes place within
Medicaid-funded LTSS. However, it will also

Understanding Medicaid Long-Term Services

and Supports

 

Medicaid provides LTSS via two models: institutional
care (i.e., nursing home care) and home- and
community-based services (HCBS). HCBS is a cost-
effective alternative to institutional care that allows
people to live and receive services at home and in other
community settings. While state Medicaid agencies
continue to shift away from institutional care toward
lower-cost HCBS alternatives, Medicaid still pays for
most institutional care provided in America. As of 2018,
Medicaid paid for the care of 62 percent of nursing home
residents nationwide.

In 2013, for the first time, more Medicaid dollars were
spent on HCBS than on institutional care. Today, both
the total amount of Medicaid dollars spent on LTSS and
the percentage of Medicaid LTSS dollars spent on HCBS
continue to grow year over year. Given that Medicaid

is the largest payer of LTSS and that HCBS is now the
dominant service delivery model within Medicaid,
improving Medicaid-funded HCBS is perhaps the most
effective way to improve the nation’s LTSS delivery
system as a whole.

“An Overview of Long-Term Services and Supports and Medicaid: Final Report,” Health
and Human Services Office of the Assistant Secretary for Planning and Evaluation,
Washington, DC, August 6, 2018. https://aspe.hhs.gov/basic-report/overview-long-term-
services-and-supports-and-medicaid-final-report.

3AARP and National Alliance for Caregiving, Caregiving in the United States 2020 (Washington, DC: AARP, May 2020), https://doi,org/10,26419/ppi.00103.001.

4Nga Thach and Joshua Wiener, “An Overview of Long-Term Services and Supports and Medicale: Final Report,” Health and Human Services Office of the Assistant Secretary for Planning and
: bhs.gov, or verview-! -fi

Evaluation, Washington, DC, August 6, 2018, h

 

 

2 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

include analysis of self-direction programs serving older people and adults with physical disabilities
across all funding sources, including state-funded programs and Veteran-Directed Care. A full list of all
self-direction programs serving these populations is available in Appendix 1.

While this paper focuses on Medicaid-funded LTSS waivers and Veteran-Directed Care, these are just
two types of public programs that pay family caregivers to provide care. Other programs that do

this include Medicaid HCBS state plan amendment (SPA) personal care programs and Department of
Veterans Affairs, Program of Comprehensive Assistance for Family Caregivers (PCAFC). Under a SPA
for personal care, a state can establish policies about whom the Medicaid enrollee can hire, including
whether or not the enrollee can hire legally responsible family members.° The PCAFC program
provides caregivers of eligible Veterans a monthly financial stipend, access to resource, education, and
supportive services.®

Pandemic Phenomenon: Long-Term Care Concerns Magnified

The COVID-19 outbreak has intensified longstanding problems in long-term care. Nursing homes were
among the first COVID-19 “hotspots” in the United States,7 with their residents’ death rates from the
virus far exceeding those of the general population. As of December 4, 2020, 38 percent of COVID-19
deaths in America were among nursing home residents and staff, in spite of such individuals composing
just 5 percent of total COVID-19 cases.8 During the initial outbreak of the pandemic, inadequate
infection control and prevention practices, shortages in personal protective equipment, insufficient
staffing, and high levels of interpersonal contact all contributed to environments in which the spread of
the disease was difficult to control, even after nursing homes implemented strict isolation protocols for
residents.

Meanwhile, the pandemic has only exacerbated nursing homes’ challenges related to social isolation.
Residents’ family members, long-term care ombudsmen, and clinicians across the nation continue to
report that isolation and loneliness from nursing home lockdowns are causing significant declines in
residents’ physical and mental health.°

While nursing homes have battled these widely publicized issues, the COVID-19 pandemic has also
exacerbated service delivery challenges for people who receive HCBS. An ongoing nationwide shortage
of direct care workers and high turnover within the industry has made it difficult for people who need
LTSS in home- and community-based settings to reliably receive the full amount of care they need."

Low wages are a primary driver of that shortage. According to the Bureau of Labor Statistics, the
median hourly wage for a personal care aide was $12.71 in 2019"—far lower than the US median hourly

5Neva Kaye and Salom Teshale, “Medicaid Supports for Family Caregivers,” National Academy for State Health Policy, Washington, DC, October 2020, httos://www.nashp.org/wp-content/
uploads/2020/10/Medicaid-Supports-for-Family-Caregivers.pdf.

“Additional information about the Program of Comprehensive Assistance for Family caregivers is avaranle at https://www.caregiver.va.gov/support/support_benefits.asp#:~ “text The220
am% % ehe a %20after% www. federalregi. ments/2020/07/31/2020-15931/program-

 

 

Tike Baker, “Nursing Home Linked to 37 Coronavirus Deaths Faces Fine of $600,000,” New York Times, April 17, 2020, https://www.nytimes.com/2020/04/02/us/virus-kirkland-life-care-nursing-home.html.
More Than 100,000 U.S. Coronavirus Deaths Are Linked to Nursing Homes,” New York Times, December 2020, https://www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html.

 

Emily Paulin, “Is Extended Isolation Killing Older Adults in Long-Term Care?”, AARP, September 3, 2020, https://www.aarp.org/caregiving/health/info-2020/covid-isolation-killing-nursing-home-
residents.html.

1°'Direct Care Workers in the United States: Key Facts,” Paraprofessional Health Institute, September 8, 2020, https://phinational.org/wp-content/uploads/2020/09/Direct-Care-Workers-in-the-United-
States-2020-PHLpdf.

4'Home Health Aides and Personal Care Aides,” US Bureau of Labor Statistics, September 1, 2020, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm.

 

 

 

3 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

wage of $19.33 for the same year.’ Meanwhile, jobs that offer similarly low wages, such as those in the
fast food industry," typically do not impose a level of physical* and emotional strain comparable to
what direct care workers routinely experience.

The shortage of direct care workers will only grow, as the Bureau of Labor Statistics projects that “home
health and personal care aides” will add more jobs than any other occupation in America from 2019 to
2029. Since the majority of workers’ wage rates are set by Medicaid and not subject to market forces,
attracting an adequate number of new direct care workers to professional caregiving will require
substantial increases in Medicaid reimbursement rates for personal care and home health services.

While low wages have always limited the growth of the home care workforce, COVID-19 has generated
changes that further limit the availability of professional caregivers. School and daycare closures have
compelled some direct care workers to stay home with their children or care for their own loved ones,
limiting their ability to provide home care to others. Since many direct care workers serve multiple
clients in the same workweek, workers have had well-founded concerns about personally contracting
the SARS-CoV-2 virus that causes COVID-19 and unknowingly spreading the virus across multiple
households.

Turning to Family Caregivers

As a result of these and other challenges, such as government-mandated lockdowns, older people and
adults with physical disabilities have turned to family members even more for the care they need.
Family caregiving offers key advantages to limit care recipients’ risk of contracting COVID-19. For
example, when a person receives care from a family member with whom they already live, the act of
providing care is unlikely to expose either party to additional risk of contracting COVID-19. This stands
in stark contrast to the risks posed by receiving services from direct care workers who often serve
multiple clients, or the risks inherent in nursing homes. Even family members who do not live with the
care recipient offer a lower-risk caregiving scenario compared with a home care worker who travels
from client home to client home, which increases the risk of the worker contracting and spreading
COVID-19.

While paying family caregivers is not a new concept, the vast majority of family caregivers are unpaid.
However, paying family caregivers has become more urgently needed and more commonly used to
help meet the rising demand for care, an issue that has been magnified by the pandemic. However,
prior to the initial COVID-19 outbreak, many states had longstanding restrictions on the types of
family members who Medicaid beneficiaries could hire as caregivers. A recent study showed that, of
262 programs nationally, across all populations and funding sources, that allowed people who needed
LTSS to hire their own staff (see What Is Self-Direction? textbox), 144, or well over half, did not allow
at least some types of family caregivers to be paid for their work.'* This proved a barrier to more

“Elise Gould, “State of Working America Wages 2019: A Story of Slow, Uneven, and Unequal Wage Growth over the Last 40 Years,” Economic Policy Institute, Washington, DC, February 20, 2020,
https://www.epi.org/publication/swa-wages-2019/.

+Food and Beverage Serving and Related Workers,” US Bureau of Labor Statistics, September 1, 2020, https://www.bls.gov/ooh/food-preparation-and-serving /food-and-beverage-serving-and-

related-workers, htm.

 

According to a 2018 PHI report, the direct care workforce provides extensive physical assistance for people who receive LTSS. Occupational injury rates for LTSS direct care workers are among the
highest in the United States. Stephen Campbell, “Workplace Injuries and the Direct Care Workforce,” PHI, Bronx, NY, April 2018, httos://phinationaLorg/wp-content/uploads/2018/04/Workplace-
njuries-and-DCW-PH|-2018.pdf.

Most New Jobs,” US Bureau of Labor Statistics, September 1, 2020, https://www.bls.gov/ooh/most-new-jobs.htm.

Merle Edwards-Orr et al., “National Inventory of Self-Directed Long-Term Services and Supports Programs: For the AARP State Scorecard of Long-Term Services and Supports,” AARP Public Policy
Institute, Washington, DC, September 2020.

 

4 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

 

What Is Self-Direction?

Self-direction is a model of HCBS in which the individual who receives services decides how, when, and from whom
those services will be delivered. Self-direction is a flexible alternative to “traditional” HCBS, in which a person receives
services from a worker employed by a home care agency and the person generally has less control over how his or her
services are delivered.

In most cases, a person who self-directs will legally serve as the employer of his or her workers. If the person is unable
or unwilling to serve as an employer, he or she can designate someone he or she knows and trusts to serve in that
role. People who self-direct use a Financial Management Services entity to handle compliance and administrative
responsibilities related to being an employer, such as processing payroll and paying taxes, on their behalf.

Participants in self-directed programs often choose to hire family, close friends, or neighbors as paid caregivers. It is
common for participants to prefer to receive services from someone they already know and trust, particularly when
assistance with intimate tasks like bathing and dressing is required.

While these jobs typically do not require a specialized skillset or formal training, it is not uncommon for complex care
to be part of their role. Meanwhile, family, close friends, or neighbors hired as caregivers can come with a major asset:
since caregivers in self-direction frequently already know the person to whom they are providing services, they often
begin formal employment with a deep understanding of how to provide care to that person, in addition to having some
form of personal relationship with him or her.

Common job duties include assistance with bathing, dressing, eating, and toileting, as well as meal preparation,
housekeeping, and providing transportation. Many workers in self-direction also manage complex responsibilities,
such as medication management, injections, and catheter care.

As of 2019, there were over 250 self-direction programs in the United States, and the number of participants who
self-direct continues to grow year over year.” The number of self-direction programs and these programs’ policies

on whether participants can hire family caregivers are tracked as part of the National Inventory of Self-Directed LTSS
Programs, in support of the 2020 Long-Term Services and Support State Scorecard. The majority of self-direction is
funded by Medicaid, although some programs are funded by the Veterans Administration, state tax revenues, and other
sources. Each state sets its own rules for determining whether a resident of the state is eligible for participation in
Medicaid-funded LTSS.

“Edwards-Orr et al., “National Inventory of Self-Directed Long-Term Services and Supports Programs.”

widespread paid family caregiving, until the public health emergency resulting from the COVID-19
outbreak spurred states to action.

When COVID-19 cases mounted during the spring of 2020, state Medicaid agencies swiftly expanded
their self-direction programs (see What Is Self-Direction? textbox) to allow more family members to

be hired and paid as caregivers.” Such action was taken to protect continuity of care for vulnerable
individuals, the majority of whom are older people and people with physical disabilities. Over 15 states
issued temporary emergency rule changes permitting Medicaid waiver programs to give participants in

“Molly Morris, “Appendix K Tracker,’ www.appliedselfdirection.com, August 28, 2020, https://www.appliedselfdirection.com/resources/appendix-k-tracker.

 

5 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

self-direction programs the choice to hire family members to provide their care. Medicaid-funded self-
direction programs are available in all states and the District of Columbia and offer a clear pathway that
can enable states to allow family members to be paid to provide care to older family members and adult
family members with disabilities.”

According to a Public Partnerships analysis of 10 states’ Medicaid self-direction programs serving older
people and adults with physical disabilities with an institutional level of care, 25 percent of all direct
care workers who supported self-directed clients in 2019 had a familial relationship with the person

to whom they provided services."® According to the same analysis, in 2019, 16 percent of workers in
self-direction lived full time in the same household as the person to whom they provided services.”°
This number varied by state and was often higher in more rural states. An analysis of a Minnesota self-
direction program serving older people found that approximately 44 percent of program participants
lived with their caregiver in 2019, and that the median age of program participants was 76.7!

What Gets in the Way of Enabling a Promising Resource

In spite of the advantages of providing pay for family caregivers, the concept has met certain barriers.
As noted above, prior to the COVID-19 outbreak, states commonly imposed restrictions on the types of
family members who could be hired to provide paid services in Medicaid-funded self-direction.”? One
of the most common restrictions states imposed is that a person may not hire his or her spouse as a
paid caregiver, with the rationale that caring for one another is a responsibility inherent in the spousal
relationship. However, in a pandemic environment, this restriction can force spousal caregivers to leave
the house to go to work while hiring an outside caregiver to enter the home and care for his or her
spouse—a situation that is clearly suboptimal from a risk management perspective.

Concerns about family members committing fraud by billing for hours not worked also motivated these
policy choices restricting family from serving as paid caregivers. However, research shows that fraud

is extremely rare in Medicaid-funded self-direction and does not occur at a higher rate than in other
Medicaid personal care services.”

A Pandemic-Inspired Shift

The map in Figure 1 highlights state policies prior to and during the COVID-19 pandemic that allow
individuals receiving HCBS services in self-directed programs across Medicaid and state funding
sources-that is, 1915(c) waivers, state plans, and non-Medicaid state programs-—to hire and pay
family members to provide their care.‘ A full list of self-direction programs serving older people and
individuals with physical disabilities across all funding sources is available in Appendix 1.

Applied Self-Direction, “2019 Self-Direction Inventory,” unpublished database, November 2020. Data were initially collected as part of the 2019 National Inventory of Publicly Funded Self-Directed
Long-Term Services and Supports Programs in the United States Survey for the 2020 Long-Term Services and Supports State Scorecard, Susan Reinhard, et al., “Long-Term Services and Supports
State Scorecard, 2020 Edition,” AARP Public Policy Institute, Washington, DC, September 24, 2020, http://www.longtermscorecard.org/~/media/Microsite/Files/2020/LTSS%202020%20Referen

Edition%20PDF%20923.pdf.

Public Partnerships, “Self-Direction in Medicaid Home and Community-Based Waiver Programs Serving Participants Requiring Nursing Facility Level of Care,” unpublished paper, Boston, MA, July 2020.
Ibid.

2 Accra Care, “Self-Direction Data,” unpublished database, August 2020.

2 Edwards-Orr et al., “National Inventory of Self-Directed Long-Term Services and Supports Programs.”

33 Jennifer Schore, Leslie Foster, and Barbara Phillips, “Consumer Enrollment and Experiences in the Cash and Counseling Program,” Health Services Research 42, no. 1, pt. 2 (2007), 446-466,

https://doi.org/10.1111/).1475-6773.2006,00679.x.

Molly O’Malley Watts, MaryBeth Musumeci, and Priya Chidambaram, “Medicaid Home and community. Based Services Enrollment and Spending” Issue Brief,” ‘The Henry J. Kaiser Family
Foundation, Washington, DC, February 4, 2020, h kff. -h - - ff.

 

 

6 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

FIGURE 1. STATE POLICIES ALLOWING PAID FAMILY CAREGIVING IN SELF-DIRECTED PROGRAMS FOR
ADULTS AGES 65+ AND ADULTS WITH PHYSICAL DISABILITIES

November 2020 Allows Paid Family Caregivers*

LINo

il Yes, all family members allowed in policy predating COVID-19

i Yes, policy changed temporarily in response to COVID-19

1 Yes, some family members allowed in policy predating COVID-19

   
 

District of Columbia

*See Appendix 1 for information on family member restrictions by program type in each state.

Source: AARP Public Policy Institute, 2020 Long-Term Services and Supports State Scorecard (Washington, DC: AARP Public Policy Institute, 2020);
Centers for Medicare & Medicaid Services, Emergency Preparedness and Response for HCBS 1915(c) Waivers,” Baltimore, MD, November 2020.

States that made temporary rule changes in response to COVID-19 have not yet decided whether

these changes will become permanent features in their programs. However, in evaluating such
decisions regarding fostering a strong paid family caregiver base, states should consider that Medicaid
reimbursement rates at their current levels are not sufficient to attract an adequate number of direct
care workers into the professional home care workforce. Meanwhile, COVID-19-related budget shortfalls
will make it unlikely that states will be able to raise Medicaid reimbursement rates in the near term,
given their obligation to balance their budgets.”

Expanding opportunities for paid family caregivers can help states ensure they have adequate caregiving
resources to meet rising demand. The demands of family caregiving are often so great that the time
required for caregiving often precludes caregivers’ ability to maintain other employment. Without
receiving monetary compensation for services provided, family caregiving is far less sustainable over

the long term. In addition, paying family caregivers not only expands the pool of available caregivers but
also frees up more of the limited professional direct care workforce to provide services to those for whom

Sally Mabon, Marissa Kom, and Heather Howard, ‘State Budget A Actions in Response to Covi: 19 and the te Impact on State Health Programs, State Health & Value Strategies, Princeton, NJ, July 31,
E h g/an-early-look-a -budg E -the-ime -state-health-prog

 

 

7 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

family caregiving is not an option. As a first step, states should consider permanently easing restrictions
on the type of family caregivers eligible to be paid through Medicaid self-direction programs.

Paying Family Caregivers Benefits the Whole Family
In addition to expanding the caregiver

pool, the option of paying family caregivers FIGURE 2. COMPARING COSTS OF SELF-DIRECTED
benefits both caregivers and recipients, and HCBS TO NURSING HOME CARE, 2019-29
even the family as a whole. Family caregiving (PROJECTED)

already serves an undervalued but critical ™ 2019

role in mitigating the growing strain on the @ 2029 (projected with 3% inflation)

LTSS system. As Americans continue to live

longer, family members increasingly are $99,577

   
 
    
 

providing ever more complex care at home
and may be doing so for longer periods

than ever before.”° A family caregiver’s
responsibility to provide the high level of
care that many older people require can
make it difficult or even impossible for the
caregiver to simultaneously maintain another
job. By paying family caregivers through
self-direction, the need to maintain other

$74,095

$28,609
$21,288

; oo : : Average Cost of Average Cost of
employment is mitigated, which will help Self-Directed HCBS Semi-Private Nursing
expanid access to HCBS for older people and Home Room

people with physical disabilities.

Sources: American Council on Aging, “Medicaid Coverage of Nursing Home

Expanded access to HCBS is a successful Care: When, Where and How Much They Pay,” Medicaid Planning Assistance,
outcome both for people who need LTSS and San Francisco, CA, January 7, 2020, https://www.medicaidplanning

ne assistance.org/medicaid-and-nursing-homes/; Public Partnerships, “Self-
for taxpayers. The vast majority of adults ages Direction in Medicaid Home and Community-Based Waiver Programs
50 and older would rather live at home as Serving Participants Requiring Nursing Facility Level of Care,” unpublished
they age than live in a nursing home,27 and paper, Boston, MA, July 2020.

nursing home care is far costlier on average

than is self-directed HCBS serving Medicaid

1915(@) waiver program recipients who require

an institutional level of care. As shown in figure 2, the following graph, the disparity in Medicaid cost
between self-directed HCBS and nursing home care is projected to dramatically increase over the next
10 years.

According to the multistate Public Partnerships analysis, participants ages 65 and older and adults with
physical disabilities in Medicaid-funded self-direction programs who would otherwise be eligible for
nursing home care received, on average, a monthly budget of $1,774 for self-directed care in 2019.7" This

26 Susan Reinhard et al., “Home Alone Revisited: Family Caregivers Providing Complex Care,” AARP Foundation, Washington, DC, April 2019, https://Awww.aarp.org/content/dam/aarp/ppi/2019/04/
home-alone-revisited-family-caregivers-providing-complex-care.pdf.

7 Joanne Binette and Kerri Vasold, “2018 Home and Community Preferences: A National Survey of Adults Age 18-Plus,” AARP Research, Washington, DC, August 31, 2018, https://doi.org/10.26419/
res.00231.001.

Public Partnerships, “Self-Direction in Medicaid Home and Community-Based Waiver Programs.”

 

8 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

figure stands in stark contrast to the average cost of a Medicaid-funded semi-private nursing home room,
which was $6,175 per month in 2019.”

Looking beyond cost, paid family caregiving through self-direction can offer a critical lifeline to families
that want to provide care to a family member but cannot otherwise afford to do so. Therefore, paid
family caregiving through self-direction answers multiple needs the person who needs care can age in
place among close family members; the family caregiver earns modest income for the difficult work he
or she performs, which facilitates the sustained provision of low-cost HCBS while possibly lessening the
impact of the caregivers’ lost job hours; and costly institutionalization is delayed or avoided entirely.

Conclusion

The COVID-19 pandemic has highlighted the necessity of paying family caregivers to strengthen the
nation’s strained home care workforce and make the practice of caregiving more sustainable for
families that want to keep a family member or close friend at home and in the community. Importantly,
paid family caregiving provides a low-risk treatment option for vulnerable adults during pandemics
and supports the whole family in a cost-effective way. It maximizes older adults’ stated preferences

for care while supporting people who want to age at home rather than live in institutional settings.
Given the volume of national recommendations that have already been made about family caregiving,
this report’s recommendations are hardly novel.*° However, the urgency brought on by the COVID-19
pandemic has further underscored their necessity, both in the near and long term.

State Medicaid agencies, therefore, should consider implementing permanent policies that encourage
and facilitate paid family caregiving. To start, states should consider easing restrictions on the types
of family members who can provide paid services via Medicaid-funded self-direction programs.
While raising Medicaid reimbursement rates to attract more professional direct care workers may not
be possible during a time of budget shortfalls, allowing family members to join the paid home care
workforce expands access to cost-effective and safe HCBS for Medicaid beneficiaries who need it.
States should also ensure that easy-to-understand information about their self-direction opportunities
is available in a variety of formats to help expand access to these programs. Also, further investing in
respite and other caregiver support services can help relieve the substantial emotional and physical
burdens of caregiving.

Finally, both individuals who receive unpaid care from a family member and the family caregivers
themselves are encouraged to learn more about self-direction opportunities in their state. Even if

a given state restricts paid family caregiving, self-direction can broaden people’s access to care by
allowing them to hire friends and neighbors. While most self-direction is funded through Medicaid,
other funding options exist, such as state-funded programs and the Veteran-Directed Care program. A
list of all self-direction programs as of 2019 is available at https /Wwww.appliedselfdirection.com/self-

direction-programs.

American Council on Aging, “Medicaid Coverage of Nursing Home Care: When, Where and How Much They Pay,” Medicaid Planning Assistance, San Francisco, CA, January 7, 2020, https://www.
medicaidplanningassistance.org/medicaid-and-nursing-homes/.

Wendy Fox-Grage, “Inventory of Key Family Caregiver Recommendations—The National Academy for State Health Policy,’ National Academy for State Health Policy, Washington, DC, April 14, 2020,
https://www.nashp.org/inventory-of-key-family-caregiver-recommendations.

 

 

9 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

About the Authors

Kate Murray is a Principal at Applied Self-Direction. She specializes in helping state government
agencies develop and operate flexible, innovative self-direction programs for older adults and
people with disabilities.

Merle Edwards-Orr is an executive technical assistance consultant at Applied Self-Direction
where he provides technical assistance to state self-directed programs and recently oversaw the
2019 Inventory of Self-Directed Programs.

Highsmith Rich is a research and technical assistance analyst at Applied Self-Direction. Her area
of expertise lies in self-directed program development and mental health research and advocacy.

Molly Morris is a senior technical assistance consultant at Applied Self-Direction. Her areas of
expertise include self-direction, home and community-based services, aging, and social work.

Kathleen Ujvari is a senior strategic policy advisor at the AARP Public Policy Institute. Her areas
of expertise include long-term services and supports and long-term care insurance.

Acknowledgments

The authors acknowledge the work of the LTSS Choices project team, whose profiles are available at

https://www.aarp.org/ppi/experts/Itss-choices/. We also appreciate the thoughtful contributions of
Elaine Ryan and Rhonda Richards.

Appendix 1 - State-by-State Analysis of Family Caregiver Rules in Self-Direction Programs Serving
Older People and People with Physical Disabilities

Updated November 2020. Restrictions are subject to change at any time.

 

10 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name

Funding Source

Family Caregiver Restrictions

 

Alabama

Alaska

Arizona

Arkansas

California

Colorado

Elderly and Disabled Waiver

Personal Choices

SAIL Waiver

Veteran-Directed Care -
Tuscaloosa

Veteran-Directed Care -
Anchorage

Arizona Health Care Cost
Containment System

Veteran-Directed Care - Tucson

Independent Choices

Veteran-Directed Care -
Fayetteville

Veteran-Directed Care - Little
Rock

In-Home Supportive Services Plus
Option

Personal Care Services Program

Veteran-Directed Care - San Diego

Consumer-Directed Attendant
Support Services

In-Home Support Services
Veteran-Directed Care - Denver

Veteran-Directed Care - Grand
Junction

Medicaid 1915(c)
Medicaid 1915(j)

Medicaid 1915(c)

Veterans Affairs

Veterans Affairs

Medicaid 1115

Veterans Affairs

Medicaid State Plan

Veterans Affairs

Veterans Affairs

Medicaid State Plan

Medicaid State Plan

Veterans Affairs

Medicaid 1915(c)

Medicaid 1915(c)
Veterans Affair

Veterans Affairs

No restrictions

Personal Choices does not allow spouses
or legally responsible individuals.

SAIL Waiver does not allow spouses or
legally responsible individuals.

No restrictions

No restrictions

No restrictions

No restrictions

Independent Choices does not allow
spouses.

No restrictions

No restrictions

No restrictions

Personal Care Services Program does
not allow spouses.

No restrictions

Restrictions lifted under Appendix K*

Restrictions lifted under Appendix K
No restrictions

No restrictions

“Appendix Kis a formal document that states can submit to the federal government to request temporary changes or modifications to their waiver(s) during an emergency. The purpose of Appendix K is to
ensure states are able to act quickly to address emergencies, such as a pandemic or natural disaster.

 

11 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name

Funding Source

Family Caregiver Restrictions

 

Connecticut

Delaware
District of

Columbia

Florida

Georgia

Hawaii

Idaho

Community First Choice

Connecticut Home Care Program
for Elders

Personal Care Assistance Program

Veteran-Directed Care - New
Haven

Attendant Services Program
Diamond State Health Plan Plus

Elder and Person with Physical
Disabilities Waiver

Veteran-Directed Care - District of
Columbia

Florida Long-Term Care Waiver
Veteran-Directed Care - Bay Pines

Veteran-Directed Care -
Gainesville

Veteran-Directed Care - Miami
Veteran-Directed Care - Orlando
Veteran-Directed Care - Tampa

Veteran-Directed Care - West
Palm

Elderly and Disabled Waiver
Independent Care Waiver
Veteran-Directed Care - Atlanta
QUEST Integration
Veteran-Directed Care - Honolulu

Aged and Disabled Waiver

Veteran-Directed Care - Boise

Medicaid 1915(k)

Medicaid 1915(c)

Medicaid 1915(c)

Veterans Affairs

State funded
Medicaid 1115
Medicaid 1915(c)

Veterans Affairs

Medicaid 1915(c)
Veterans Affairs

Veterans Affairs

Veterans Affairs
Veterans Affairs
Veterans Affairs

Veterans Affairs

Medicaid 1915(c)
Medicaid 1915(c)
Veterans Affairs
Medicaid 1115
Veterans Affairs

Medicaid 1915(c)

Veterans Affairs

Community First Choice does not
allow spouses or legally responsible
individuals.

Connecticut Home Care Program for
Elders does not allow spouses or legally
responsible individuals.

Personal Care Assistance Program does
not allow spouses or legally responsible
individuals. Personal Care Assistance
Program under Appendix K does not
permit “liable family members.”

No restrictions

No restrictions
No restrictions

No restrictions under Appendix K

No restrictions

No restrictions
No restrictions

No restrictions

No restrictions
No restrictions
No restrictions

No restrictions

No restrictions under Appendix K
No restrictions under Appendix K
No restrictions
No restrictions
No restrictions

Aged and Disabled Waiver does not
allow legally responsible individuals or
spouses.

No restrictions

 

12 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name

Funding Source

Tan Wer last:4 ela Ceci ea (eld Co aly

 

Illinois Persons with Disabilities/ Medicaid 1915(c)

Physically Disabled

Veteran-Directed Care - Chicago Veterans Affairs

Veteran-Directed Care - Danville Veterans Affairs
Veteran-Directed Care — Hines Veterans Affairs
Veteran-Directed Care - Marion Veterans Affairs

Veterans Affairs

Veteran-Directed Care - North
Chicago

Persons with Disabilities/Physically
Disabled does not allow spouses or
legally responsible individuals.

No restrictions
No restrictions
No restrictions
No restrictions

No restrictions

 

lowa Consumer Choices Option Medicaid 1915(c)

Consumer-Directed Attendant Medicaid 1915(c)

Care

Veteran-Directed Care-lowa City Veterans Affairs

Consumer Choices Option does not
allow spouses or legally responsible
individuals.

Consumer-Directed Attendant Care does
not allow spouses or legally responsible
individuals.

No restrictions

HCBS Transitions Medicaid 1915(c)

Medicaid 1915(c)

Kentucky

HCBS Waiver
Veteran-Directed Care- Lexington Veterans Affairs

Veteran-Directed Care - Louisville Veterans Affairs

  
 

Maine Elderly and Adults with State funded

Disabilities Waiver

In-Home and Community Support Medicaid 1915(c)
Services for Elderly and Other
Adults

Veteran-Directed Care - Togus Veterans Affairs

No restrictions
No restrictions
No restrictions

No restrictions

  
 

Elderly and Adults with Disabilities
Waiver does not allow spouses or legally
responsible individuals.

No restrictions

No restrictions

 

13 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name

Funding Source

Family Caregiver Restrictions

 

Massachusetts

Michigan

Minnesota

Mississippi

Moving Forward Plan Community
Living

Moving Forward Plan (MFP)
Residential Supports

Senior Care Options Personal
Care Attendant (PCA) Program

Veteran-Directed Care - Bedford
Veteran-Directed Care - Boston

MI Choice

MI HealthLink

Veteran-Directed Care - Ann Arbor

Veteran-Directed Care - Battle
Creek

Veteran-Directed Care - Detroit

Veteran-Directed Care - Iron
Mountain

Veteran-Directed Care - Saginaw

Community Access for Disability
Inclusion

Consumer-Directed Community
Supports

Consumer Support Grant
Deaf Blind Consumer Directed

Personal Care Assistance Choice

Veteran-Directed Care - Sioux
Falls

Independent Living Waiver

Veteran-Directed Care - Gulf Coast

Veteran-Directed Care - Jackson

Medicaid 1915(c)

Medicaid 1915(c)

Medicaid State Plan

Veterans Affairs
Veterans Affairs

Medicaid 1915(c)

Medicaid 1915(c)

Veterans Affairs

Veterans Affairs

Veterans Affairs

Veterans Affairs

Veterans Affairs

Medicaid 1915(c)

Medicaid 1915(c)

State funded

State funded

Medicaid State Plan

Veterans Affairs

Medicaid 1115

Veterans Affairs

Veterans Affairs

Moving Forward Plan Community Living
does not allow legally responsible
individuals or spouses.

MFP Residential Supports does not
allow legally responsible individuals or
spouses.

Senior Care Options PCA Program does
not allow legally responsible individuals
or spouses.

No restrictions
No restrictions

MI Choice does not allow legally
responsible individuals.

MI HealthLink does not allow legally
responsible individuals or spouses.

No restrictions

No restrictions

No restrictions

No restrictions

No restrictions

No restrictions

No restrictions

No restrictions
No restrictions

Personal Care Assistance Choice does
not allow spouses or legally responsible
individuals.

No restrictions

Independent Living Waiver Appendix
K does not allow legally responsible
individuals.

No restrictions

No restrictions

 

14 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name

Funding Source

Family Caregiver Restrictions

 

Missouri

Montana

Nebraska

Nevada

New
Hampshire

New Jersey

New Mexico

New York

North Carolina

North Dakota

Independent Living Waiver

State Plan Consumer-Directed
Services

Veteran-Directed Care - Kansas
City

Veteran-Directed Care - St. Louis
Big Sky
Veteran-Directed Care —- Missoula

Nebraska’s Personal Assistance
Services

HCBS Waiver for Persons with
Physical Disabilities

Choices for Independence

Veteran-Directed Care -
Manchester

Personal Assistance Services
Program

Personal Preferences Program

Veteran-Directed Care - Lyons
Centennial Care 2.0

Veteran-Directed Care -
Albuquerque

Community First Choice

Enhanced In-Home Services for
the Elderly

Veteran-Directed Care - Albany
Veteran-Directed Care - Syracuse

Community Alternative Program
for Adults with Disabilities

Veteran-Directed Care - Asheville

Veteran-Directed Care - Fargo

Medicaid 1915(c)

Medicaid State Plan

Veterans Affairs

Veterans Affairs
Medicaid 1915(c)
Veterans Affairs

Medicaid State Plan

Medicaid 1915(c)

Medicaid State Plan

Veterans Affairs

State funded

Medicaid State Plan

Veterans Affairs
Medicaid 1115

Veterans Affairs

Medicaid 1915(j)

State funded

Veterans Affairs
Veterans Affairs

Medicaid 1915(c)

Veterans Affairs

Veterans Affairs

Independent Living Waiver Appendix
K does not allow family living in the
same household, spouses, or legally
responsible individuals.

State Plan Consumer-Directed Services
does not allow spouses or legally
responsible individuals.

No restrictions

No restrictions
No restrictions
No restrictions

Nebraska’s Personal Assistance Services
does not allow spouses or legally
responsible individuals.

No restrictions under Appendix K

No restrictions under Appendix K

No restrictions

No restrictions

Personal Preferences Program does not
allow legally responsible individuals.

No restrictions
No restrictions under Appendix K

No restrictions

Community First Choice does not allow
spouses.

No restrictions

No restrictions
No restrictions

No restrictions under Appendix K

No restrictions

No restrictions

 

15 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name

Funding Source

Family Caregiver Restrictions

 

Ohio

Oklahoma

Oregon

Pennsylvania

Rhode Island

South Carolina

South Dakota

Tennessee

My Care Ohio

PASSPORT

Veteran-Directed Care -
Chillicothe

Veteran-Directed Care - Toledo
ADvantage Care

Medically Fragile Waiver

1915(j)

K Plan

Veteran-Directed Care - Portland
Veteran-Directed Care - Roseburg
Veteran-Directed Care - White City
Aging Waiver

Independence Waiver

Attendant Care Waiver

Veteran-Directed Care -
Coatesville

Veteran-Directed Care -
Philadelphia

Personal Choice (aka Consumer
Choice)

Community Choices

Assistive Daily Living Services

TennCare CHOICES

Veteran-Directed Care - Nashville

Medicaid 1915(b/c)

Medicaid 1915(c)

Veterans Affairs

Veterans Affairs
Medicaid 1915(c)
Medicaid 1915(c)
Medicaid 1915(j)
Medicaid 1915(k)
Veterans Affairs
Veterans Affairs
Veterans Affairs
Medicaid 1915(c)
Medicaid 1915(c)

Medicaid 1915(c)

Veterans Affairs

Veterans Affairs

Medicaid 1115

Medicaid 1915(c)

Medicaid 1915(c)
Medicaid 1115

Veterans Affairs

My Care Ohio restrictions lifted under
Appendix K

PASSPORT restrictions lifted under
Appendix K

No restrictions

No restrictions

No restrictions under Appendix K

No restrictions under Appendix K

No restrictions

No restrictions

No restrictions

No restrictions

No restrictions

Aging Waiver does not allow spouses

Independence Waiver does not allow
spouses.

Attendant Care Waiver does not allow
spouses.

No restrictions

No restrictions

Personal Choice does not allow legally
responsible individuals or spouses.

Community Choices does not allow
spouses or legally responsible
individuals.

No restrictions

TennCare CHOICES does not allow
individuals to hire anyone who lived
with the member within the past five
years. A family member cannot be hired
to replace “natural supports” that the
family member would generally provide
to enhance the quality and security of
life for the LTSS recipient.

No restrictions

 

16 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name

Funding Source

Family Caregiver Restrictions

 

Texas

Utah

Vermont

Virginia

Consumer Managed Personal
Attendant Services

STAR+PLUS
Veteran-Directed Care - Dallas
Veteran-Directed Care - Houston

Veteran-Directed Care - San
Antonio

Veteran-Directed Care - Temple
Aging Waiver

New Choices Waiver

Physical Disabilities Waiver

Veteran-Directed Care - Salt Lake
City

Choices for Care

Flexible Choices

Participant-Directed Attendant
Care - General Fund

Veteran-Directed Care —- White
River Junction

Commonwealth Coordinated Care
Plus

Veteran-Directed Care - Hampton

Veteran-Directed Care -
Richmond

Veteran-Directed Care - Salem

State funded

Medicaid 1115
Veterans Affairs
Veterans Affairs

Veterans Affairs

Veterans Affairs

Medicaid 1915(c)
Medicaid 1915(c)
Medicaid 1915(c)

Veterans Affairs

Medicaid 1115

Medicaid 1115
State funded

Veterans Affairs

Medicaid 1915(c)

Veterans Affairs

Veterans Affairs

Veterans Affairs

Consumer Managed Personal Attendant
Services does not allow legal guardians.

STAR+PLUS does not allow spouses.
No restrictions
No restrictions

No restrictions

No restrictions

No restrictions under Appendix K
No restrictions under Appendix K
No restrictions under Appendix K

No restrictions

Choices for Care allows parents to be
paid only if they are not the guardian.
Spouses cannot be paid for assisting
with independent activities of daily
living (IADLs) or respite, but can be paid
for companion services.

No restrictions

No restrictions

No restrictions

Commonwealth Coordinated Care
Plus does not allow spouses or legally
responsible individuals.

No restrictions

No restrictions

No restrictions

 

17 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices
~AARP’

LTSS CHOICES: PAYING FAMILY CAREGIVERS TO PROVIDE CARE DURING THE PANDEMIC—AND BEYOND

Program Name Funding Source

Tani Weel ast-4 ela Ceci ea elton)

 

Washington Community First Choice Medicaid 1915(k)

New Freedom Medicaid 1915(c)

Money Follows the
Person

Roads to Community Living

Veteran-Directed Care - Seattle Veterans Affairs

Veteran-Directed Care - Spokane Veterans Affairs

Veteran-Directed Care —- Walla Veterans Affairs

Walla

Community First Choice does not
allow spouses or legally responsible
individuals.

New Freedom does not allow spouses or
legally responsible individuals.

Roads to Community Living does not
allow spouses.

No restrictions
No restrictions

No restrictions

Wisconsin Family Care Medicaid 1915(c

Include, Respect, | Self-Direct - Medicaid 1915(c)
Self-Directed Elderly and Physical

Disability

Veteran-Directed Care - Veterans Affairs

Milwaukee

Veteran-Directed Care - Tomah Veterans Affairs

No restrictions

No restrictions

No restrictions

No restrictions

 

https://doi.org/10.26419/ppi.00127.001

 

18 | AARP Public Policy Institute © 2021 ALL RIGHTS RESERVED | www.aarp.org/LTSSChoices