Family Caregivers:
The Backbone of the United States Long-Term Elderly Care1
Gloria Knorr lives at 426 Albany Shaker Rd. Loudonville, New York. This is the address
of the house which was built in 1938 for her mother Irma Knorr, as a wedding present from her
father Charles Knorr. The house is a great pride for Irma Knorr who was a daughter of
bohemian immigrants who worked hard to provide the “American Dream” for their children.
Unfortunately, times were difficult when Charles Knorr was killed in a vehicle accident and Irma
was left alone to raise two small children, both under the age of two. Gloria Knorr was told that
some family members gave her mother advice that it was impossible for her to raise these girls
on her own, without the financial support that Charles had provided. Although Irma’s mother
could help tend to the children, money was very tight. Given the difficulties some felt it was best
for the children to be put up for adoption.
Irma refused. Instead she went to work. She was employed at the Watervliet Arsenal
during World War II, and was accepted to Albany Business College. When the registrar
assumed she had graduated from high school Irma did not correct him/her. Instead she taught
herself how to perform so no one would have a reason to question her ability. Irma accepted a
secretarial position at a local school where she remained for her 32 year career. She also rented
out the house on 426 Albany Shaker for extra income while she lived in a small farm house with
her mother. Years went by; Irma continued to provide support for her family and eventually
made enough money to return to the Albany Shaker home in 1957. Although she was grateful
for the help of her family on the farm, Irma was pleased to be returning home with her daughters
to the house that was built for them.
Gloria Knorr remembers the strength of her mother’s support. Any problem Gloria faced
Irma was there to lend a helping hand. Irma supported Gloria emotionally through nursing
school, marital problems, and a financial hardship. During difficult times when Gloria became a
single mother, Irma continually reiterated “you will always have a home here” and helped Gloria
raise her own children, giving them the same assurance.
Irma Knorr was diagnosed with Alzheimer’s disease in 1992. It became apparent that she
would not be able to continue to live on her own. Gloria lived in a nearby city where she worked
as a home day-care provider. Her experience as a retired nurse prepared her for what Irma was
up against and she made a decision to have her mother move in with her. It was difficult to live
away from the Albany Shaker house. However, Irma’s retirement pension from her school
secretary job paid for the taxes on the house and they visited it often. After a few years, Irma’s
Alzheimer’s disease prevented her from performing simple tasks. She could not dress herself,
eat on her own, or remember where she was. While living with Gloria, Irma frequently told
people that she had to go home, and even left Gloria’s house a few times wandering the
neighborhood. Gloria could not maintain her family day-care and care for her mother at the
1
This paper is centered on the impacts to caregivers providing long-term caregiving to a relative. The story of
Gloria and Irma Knorr is the story of my mother and grandmother.
1
same time. She chose to give up the day-care (her main income source) and move back into the
Albany Shaker home with Irma.
Caring for Irma is currently much more than a full-time job. The years living with
Alzheimer’s disease has taken its toll on Irma’s mind. Additionally, two years ago Irma suffered
a stroke paralyzing the left side of her body. Irma relies on Gloria for everything. Feeding Irma
one meal takes up to two hours because her throat muscles do not function well and she can only
consume small portions. Gloria prepares special healthy meals fortified with vitamins and soft
enough to swallow so that her mother is sure to get proper nourishment. Irma is prone to
choking even on her own saliva. Gloria takes a baby monitor with her whenever she is out of ear
range so that she can hear if Irma chokes, then making sure that Irma is sitting upright and
everything is cleared from her mouth. Irma can not move on her own so Gloria turns her in
different position every 2 hours to prevent bed sores. Gloria bathes her and changes her
dressings. Most importantly Gloria hugs, talks with, and prays with Irma. Although Irma rarely
speaks, there are moments when she is able to convey her appreciation through loving eyes and
hand-holding.
Through the different stages of Irma’s disease Gloria has tried to utilize programs aimed
to help caregivers, and the elderly. Although during the beginning phase of the disease Gloria
exclusively provided all of Irma’s care, she began to understand that Irma frequently became
restless (especially when Gloria’s attention was elsewhere with everyday chores). Gloria was
not aware of any publicly provided programs or services for people in her situation until she
attended a caregiver’s support group through the Colonie Senior Service Center. The support
group was beneficial, in not only through the sharing common experiences but also sharing
information dealing with adult day care services, health care, respite care, coping with stress, and
estate planning. Irma began attending Bright Horizons Adult Day Care three days a week (at an
out of pocket cost of $20-$30 dollars a 7 hour day). Bright Horizons serviced on average 30
seniors a day offering social and recreational activities. Adult day care not only provided social
interaction for Irma but allowed Gloria to see to other family responsibilities.
When Irma turned 88 years old she suffered a stroke and could no longer attend adult day
care. Subsequently, she qualified for Medicare and instead of going to a hospital; Seton Health
Center of St. Mary’s Hospital provided 7 ½ hours a week of home nursing care, until Irma
stabilized 2 months later. At this time Gloria became solely responsible for taking care of Irma’s
every need. Some support came from the Newtonville Care Team, a local church group whose
members donated a few hours a week to sit with Irma while Gloria went to the store, exercised,
or visited her children. The Newtonville Care Team also constructed a ramp so that Irma’s
wheelchair could go outside while Gloria worked in the garden. Irma also began receiving
respite care for nursing assistant visits through Catholic Charities2 (up to $500 per year towards
care and personal out of pocket expense $16-$20 for any costs above the $500 threshold).
Gloria found a doctor who performed home visits. She informed Gloria that Irma was
eligible for Hospice care. Hospice offers a team approach to care for people who are in the
advanced stages of any illness. A registered nurse comes once a week to do Irma’s medical
2
Caregivers Respite Program of Catholic Charities is a non-for profit organization dedicated to helping provide
respite care to the caregiver who is responsible for 24-hour care of a parent or spouse.
2
assessment and report findings to the doctor; a home health aid assists in the physical care every
weekday for 1 ½ hours; a chaplain comes once a week and provides spiritual counseling; and a
social worker visits to provide support and counseling to the family. All of Irma’s Hospice
services are covered by Medicare.
Gloria will continue to care for Irma until she passes. Gloria is currently 63, does not
have health insurance, has dedicated the last 12 years to caring for Irma (last 10 exclusively
without other employment), and lives off a small pension and Social Security.
Gloria Knorr is a caregiver. She is not alone. It is estimated that caregivers provide 80%
of care to people who need assistance with every day activities such as eating, bathing, taking
medication, and paying bills.3 “[T]he family caregiver includes anyone who provides unpaid
care and has a personal connection with the care recipient, such as blood relatives, friends and
neighbors.”4 The majority of family caregiving services are unpaid “informal” care giving by
family members; if these caregivers were replaced by paid “formal” services, it would come at a
cost of $196 billion dollars per year.5 Studies suggest the number of caregivers in the United
States ranges from between 45-52 million people. Caregivers are typically women who are also
employed outside the home. A little less than a quarter of caregivers financially support their
older relative (most of them representing a racial minority group), and more than one-fifth of
them care for a person with a mental disability such as Alzheimer’s disease.6
The role of the caregiver encompasses many responsibilities. The New York State Office
of the Aging describes the ever changing role of the caregiver on its website; “[a]t various times
you [the caregivers] may be manager, organizer, observer, consumer, and legal, financial and
medical planner. It’s certain that your [the caregiving] role will change constantly as your
carereceiver’s condition changes.”7
Family caregivers are the backbone of the long-term care system in the United States.
Although caregiving comes in many forms (child, disabled, illness) family care giving of the
elderly is frequently overlooked by today’s busy society. Care for the aging is not a “hot topic”
that people like to discuss; however, due to the aging citizenry and the troubles associated with
Social Security and Medicare/Medicaid costs, the need to develop a sustainable plan for longterm care is ever increasing. As the costs of these services are booming right along with the
baby boomers politicians are taking notice.8
Policy-makers debate whether the costs of long-term health care should be provided
publicly or by the family. Policies aimed at placing the duty on the family derive from the belief
that the parents once provided for the child and therefore the grown child should provide for the
3
Barbara Coleman & Sheel M. Pandya, Family Caregiving and Long-Term Care, AARP Research Center (2002)
available at http://research.aarp.org/il/fs91_ltc.html (last visited Nov. 24, 2004) [hereinafter Coleman].
4
Stefan Staicovici, Ph.D., Respite Care for All Family Caregivers: the Lifespan Respite Care Act, 20 J. Contemp.
HEALTH L. & POL’Y 243 (2003) [hereinafter Staicovici].
5
Coleman, supra note 3.
6
Id.
7
New York State Office of the Aging, Time to Care, New York State Office for the Aging 2001-2004 at
http://agingwell.state.ny.us/ccenter/time.htm (last visited Nov. 25, 2004) [hereinafter Time to Care].
8
Public funding for long-term at home caregiving is discussed infra.
3
parent in need.9 Values associated with “indebtedness and reciprocity” also support the theory
that children owe their parents to care for them in their old age.10 An argument in opposition to
this theory is “children do not contract for the goods and services their parents provide to them,
and therefore the simple fact that they receive such goods and services does not obligate them to
provide for their parents in return.”11 Although filial responsibility laws exist in some states12,
they are rarely enforced.13 A major criticism is that these laws pit family members against each
other. “It is counterintuitive that a law enabling one family member to sue another would foster a
warm and loving environment…. adversarial proceedings will only reduce the amount of money
family members have to offer one another, provided they are financially able to litigate in the
first place.”14
Furthermore, proscribing the elderly care duties solely to the family does not ensure
adequate treatment care to the elderly or equal assignment of the responsibilities. Class-based
discrepancies would be magnified because medical care would depend on what the family could
afford; race-based difference in treatment could result because certain races are more prone to
caring for their elderly than other races and therefore are more likely to provide better care than
races which are not accustomed to giving such care;15 finally, because the vast majority of
caregivers are women the burden of caring for the elderly will fall primarily on women’s
shoulders who will have to “forgo other opportunities and neglect other responsibilities so they
can remain at home to assist their elders.”16 Finally, laws that assign the primary care of the
elderly to the family do not take into consideration senior citizens who may not have children.17
Other private funding sources for long-term elderly care include long-term insurance and
a reversed mortgage. Long-term health insurance is extremely expensive and studies indicate
that it does not replace caregiver’s role.18 “On average, working caregivers spend only slightly
fewer hours per week with the care recipient than caregivers caring for the uninsured. This
suggests that for the most part, insurance-financed care is not an adequate substitute for family
caregiving.”19 In a reversed mortgage the bank assesses the value of a person’s house and pays
them the cash value. The loan is not repaid until the person sells the house, dies, or the contract
terms have expired.20 This option gives the person money to pay for care. However, depending
9
Katie Wise, Caring for Our Parents in an Aging World: Sharing Public and Private Responsibility for the Elderly, 5
N.Y.U. J. LEGIS. & PUB. POL’Y 563, 568 (2001/2002) [hereinafter Wise].
10
Id.
11
Id. at 568-569
12
Id. at n.66 (listing the state filial responsibility laws still in force).
13
Id. at 563 & n.66 (finding filial responsibility laws which require adult children to provide financial support to
their indigent parents do not adequately address the care costs issues because “such coercive legislation, which is
rarely enforced even in those states where it exists, does little to encourage positive family dynamics, and merely
enables indigent parents to sue their children for financial support.”).
14
Id. at 575-576
15
Id. at 577-578 (illustrating “(n)ineteen percent of Caucasians provide care for their elders, compared to twentyeight percent of African-Americans, thirty-four percent of Hispanics, and forty-two percent of Asian-Americans.”).
16
Id. at 587 (stating “legislators must recognize that caregiving, a practice that might indeed be an act of love and
concern, may nonetheless force a woman to sacrifice academic, professional, and other opportunities, and ultimately
remove her from the public sphere.”).
17
Id. at 578
18
Heather M. Fossen Forrest, Loosening the Wrapper on the Sandwich Generation: Private Compensation for
Family Caregivers, 63 LA. L. REV. 381, 389 (2003) [hereinafter Forrest].
19
Id. at 389
20
Id.
4
on the assessed value of the house, it may not be enough to ensure adequate long-term care.
Another approach is to encourage family caregiving by allowing the caregiver to have claims
over the carereceiver’s estate instead of the bank in a reversed mortgage.21 The idea is that it is
better to encourage family members to provide long-term care, promising compensation from the
family estate, than to risk having the bank selling the family home. “This would allow the heirs
to protect their inheritance while still providing much needed and valuable care for their aging
relatives.”22 Compensating family members through the estate is only an incentive when the
carereceiver has assets upon death. “However, others will die in poverty, leaving their family
caregivers with nothing in the way of compensation. In this regard, public funding is the only
source of compensation for the caregiver.”23
People in favor of governmental responsibility for elderly care point to ideologies
recognizing a social responsibility to the aging for their lifetime contributions to the United
States. Publicly funded long-term elderly care would also help alleviate the race, class, and
gender discrepancies in privately provided caregiving. Currently government programs like
Medicare/Medicaid and Social Security have improved the economic standing of older
Americans.24 However, as costs continue to rise, these programs are becoming more limited.25
Additionally, Social Security, Medicaid, and Medicare do not adequately provide for long-term
elderly care because they “barely keep the elderly above the poverty line and fail to address the
many non-financial needs of the elderly, such as assistance in completing daily tasks and their
need for companionship.”26 Furthermore, Social Security, Medicare, and Medicaid do nothing to
fund or even encourage long-term home caregiving of a relative. In fact, these programs
penalize cohabitation between caregivers and their relative because eligibility requirements in
these situations are much more strict.
Social Security is federal retirement income support for the elderly who have been
employed for at least ten years.27 The Social Security Administration also implements a needbased program derived from federal income, corporate and other taxes instead of the Social
Security tax. Unlike Social Security, Supplementary Security Income is not based on prior
employment and is paid by the United States Federal government to people who have limited
resources and are disabled, blind, or over the age of 65.28 These benefits are reduced by onethird if the recipient lives in another person’s household.29 “While no one has proven that this
reduction in benefits prevents elderly individuals from living with their adult children, the policy
penalizes family members whose financial situation requires them to live together.”30
21
Id.
Id.
23
Id.
24
Wise, supra note 9 at 580.
25
Id.
26
Id. at 564-565.
27
United States Social Security Administration, Retirement & Medicare – Qualify and Apply, (2004) at
http://www.ssa.gov/r&m2.htm (last visited Nov. 28, 2004).
28
United States Social Security Administration, Understanding Supplemental Security Income, United States (2004)
at http://www.ssa.gov/notices/supplemental-security-income/text-over-ussi.htm (last visited Nov. 25, 2004).
29
Wise, supra note 9 at 581.
30
Id.
22
5
Medicare eligibility is somewhat similar to Social Security benefits because is it
determined on whether “you or your spouse worked for at least 10 years in Medicare-covered
employment and you are 65 years old and a citizen or permanent resident of the United States.”31
The Medicare recipient is eligible for home care if they meet the following requirements: their
doctor must determine they need medical care at home and make a plan for home care; the home
care must only consist of intermittent skilled nursing care, or physical therapy, or speechlanguage therapy, or a continuing need for occupational therapy; the home health agency must be
Medicare-certified; the recipient must be homebound, or unable to leave home unassisted.32
“Medicare doesn’t pay for: 24-hour-a-day care at home; prescription drugs; meals delivered to
your home; homemaker services like shopping, cleaning, and laundry; and personal care given
by home health aides like bathing, dressing, and using the bathroom when this is the only care
you need.”33 These non-eligible services are critical social services to the elderly, which are
provided by many home caregivers.
Medicaid is a state run program for people who cannot pay for medical care.34 Although
Medicaid may help with elderly health care costs it is not directed towards long-term home care.
“With reference to Medicaid, there are strict financial guidelines, and even if these guidelines are
met, Medicaid provides only minimal support for nursing home costs and nothing for home
healthcare.”35 Furthermore, caregivers may be deterred from sharing a household with the
carereceiver in fear that they will no longer qualify for Medicaid’s assistance with medical bills.
For example, in order to be eligible for Medicaid in New York State you must be under the
threshold for monthly income and resources (which is adjusted for the number of family
members living within the household).36 Therefore, in order for an elderly person who lives with
the caregiver to be eligible for Medicaid their combined monthly income must not be greater
than $950 and their combined resources may not exceed $5700.
The greatest drawback to publicly funded long-term elderly care is the cost to the
government and tax-payer. “As the elderly population continues to grow, the states and federal
government may not be able to meet the increased financial burden of providing care.”37
However, caregivers are a valuable asset which alleviates burdens on the economy. A study
conducted as part of the Families and Health Care Project quantified caregiving’s economic
31
United States Center for Medicare and Medicaid Service, Medicare Eligibility Tool, (2004) at
http://www.medicare.gov/MedicareEligibility/home.asp?version=default&browser=IE%7C6%7CWinXP&language
=English (last visited Dec. 1, 2004).
32
United States Center for Medicare and Medicaid Service & United States Dept. of Health and Human Services,
Medicare and Home Health Care (2004) at http://www.medicare.gov/Publications/Pubs/pdf/10969.pdf (last visited
Nov. 28, 2004).
33
Id.
34
United States Center for Medicare and Medicaid Service, Medicaid Consumer Page (2004) at
http://www.cms.hhs.gov/medicaid/consumer.asp? (last visited Nov. 28, 2004).
35
Forrest, supra note 18 at 381; See also New York State Dept. of Health, Need Help Paying for Medical Care?,
New York State (2004) (illustrating home health care or any family caregiving services are not listed under “What
Health Services are Covered by Medicaid?”) at http://www.health.state.ny.us/nysdoh/medicaid/mainmedicaid.htm
(last visited Nov. 26, 2004) [hereinafter New York Medicaid].
36
New York Medicaid, supra note 34.
37
Wise, supra note 9 at 570.
6
value.38 “Because “informal” caregiving lies outside the market economy and is socially and
politically invisible, its economic value is not generally acknowledged.”39 This study took the
mean of the national minimum wage ($5.15) and average national rate for home health aids
($11.20) to calculate a caregivers hourly economic worth at $8.18. It then used the midrange of
estimated caregivers in the United States numbering 25.8 million people, and multiplied it by the
average figure of 17.9 hours that these caregivers dedicated to informal caregiving each week.
This gave them a midrange of 24 billion hours per year; at $8.18 per hour the 1997 national
economic value of informal caregiving is $196 billion.40
National spending on formal home health care and nursing home care accounts for only
58% of the midrange caregiver’s economic value.41 “Arguably, the government would face a
tremendous financial burden if family caregivers stopped providing care and the government was
faced with no other option than to publically fund this type of long-term healthcare.”42
Although the economic value of caregivers is great, additional benefits which family
caregiving provides, such as the promotion of emotional, cultural, and social values, are
impossible to quantify. However, home caregiving to a family member is very demanding and
can be extremely stressful. Many times their caregiving efforts can be a detriment to their own
incomes and personal health.
Difficult Balance between Employment and Caregiving
Caregivers serve a demanding schedule to provide care to their loved ones. These
demands often conflict with their employment commitments, thus placing caregivers into a
difficult situation of having to balance out of home work with home care. Caregiver’s
responsibilities to their relatives could impact the time they are able to dedicate to their
employed work, physically drain their work capacity, and distract them from employment
performance, thus greatly affecting work productivity.43 In 1999 MetLife conducted a “Juggling
Act” study titled “Balancing Caregiving with Work and Costs Involved” which found that
“working caregivers can incur significant losses in career development, salary and retirement
income, and substantial out-of-pocket expenses as a result of their caregiving obligations.”44
In order to view the effects of loss to caregivers as a result of wage reductions, lost
retirement benefits, and missed employment opportunities, MetLife chose 55 individuals from a
pool of participants of a 1997 study conducted by the National Alliance for Caregiving and
38
Peter S. Arno, et al, The Economic Value of Caregiving, 18 HEALTH AFFAIR 182 (1999) available at
http://content.healthaffairs.org/cgi/reprint/18/2/182 (last visited Nov. 28, 2004).
39
Id.
40
Id.
41
Id. (stating “The economic value of informal caregiving in 1997 [$196 billion] dwarfs national spending for
formal home health care ($32 billion) and nursing home care ($83 billion).”).
42
Forrest, supra note 18 at 385.
43
See, MetLife Juggling Act Study, Balancing Caregiving with Work and Costs Involved, Findings from a National
Study by the National Alliance for Caregiving and the National Center on Women and Aging at Brandies University
(1999) at http://www.caregiving.org/JugglingStudy.pdf (last visited Dec. 2, 2004) [hereinafter MetLife].
44
Id.
7
AARP.45 Out of the 1509 caregivers who originally participated in the nationally representative
survey, the 55 individuals who were chosen for the MetLife study were chosen because they
were over the age of 45, conducted at least eight hours of caregiving each week, and made some
type of work adjustment.46 The purpose of choosing a smaller sample size for the MetLife study
was to provide a detailed in-depth look into the work challenges that caregivers deal with.47
The MetLife study was the “first ever to examine the long-term costs these caregivers
face when they disrupt their work to accommodate the needs of their older loved ones.”48
Initially caregivers often underestimated the impact that caring for a family member would have
on their employed work; however, as the at home duties gradually increased, the some caregivers
found their employed work was compromised.49 Forty percent of caregivers in the MetLife
study admitted that their ability to advance at the workplace was affected by their home
responsibilities.50 This was mostly due to passing on a promotion, opportunity to relocate,
acquire new training, or even keep up with new skills or demands of their current position.51
Informal and Formal Adjustments to Work Schedule Table illustrates the specific changes to
caregivers work schedule.
52
45
Id.
Id..
47
Id.
48
Id.
49
Id.
50
Id.
51
Id.
52
Id.
46
8
53
Impacts to caregiver’s productivity varied. Half of the caregivers who participated in the
MetLife study claimed no impact to their quality of employment. Within the other half, 13%
stated little impact to their productivity, 24% found it somewhat impacted performance, and 16%
represented that their ability to work was greatly impacted.54
“[Caregiving] has a dramatic impact because first of all, you have to start cutting
your hours or you don’t work as much as you want to, and you’re paying somebody
else to stay [at home] when you aren’t there, so you’re just kind of staying even
keeled. You’re not going above anything, you’re just staying even.” Adrian, age 50
“…I went back to work because I need the money for her. I was using my savings to
take care of her. [But then] she had a stroke and I stayed there at the hospital with
her. There was no way for me to be at the hospital and work at the same time. [I had
to quit because] I wasn’t there a year yet, so they couldn’t give me a leave of absence.”
Mary, age 4855
Caregiver’s at home responsibilities not only have an impact on employers and the
national economy56 but a huge influence on the current and future income and benefits to the
individual caregivers.57
53
Id.
Id.
55
Id.
56
Id.; See also Staicovici, supra note 4 (finding “It is estimated that U.S. employers spend $ 900 million a year
because of employee absenteeism and almost $ 5 billion a year to replace workers that have quit because of family
caregiving demands. Some studies report business losses reaching a staggering figure of about $ 12 billion a year,
resulting from caregivers arriving to work late, leaving early, or being simply too exhausted to focus on work.”).
54
9
Economic Impact to Caregivers
Caregivers may have to adjust to changes in income as a result of their home care
responsibilities. Two-thirds of the participants in the MetLife study claimed negative impacts on
their income relating to becoming a caregiver. These income changes are a result of decrease in
wages, retirements and social security benefits, and pension plans.58 The MetLife study found
that the average loss in wage wealth for the caretakers was $566,433; caregivers lost $2,160 per
year in social security benefits (averaging $25,494 for their retirement years) and their pensions
fell $5,339 per year (averaging $67,202 over their retirement years).59 This total loss amounts to
$659,139 over the caregiver’s lifetime.60
In addition, caregivers often have extra out of pocket expenses in order to provide care to
their relatives. Common expenses were for transportation, medications, food, rent and mortgage
assistance, and professional home care assistance. The average period of time that caregivers
paid for these services was between two to six years, with the average amount spent over this
time equaling $19,525.61 These out of pocket expenses take away from the caregiver’s ability to
make personal investments or save for their own elderly care.62
Health Impacts to Caregivers
“Caregiving responsibilities often take a toll on the health of the caregiver.”63 Caregivers
are often accountable for a care of a sick person with whom they have a close connection;
watching this person grow more helpless offers a mix of emotions from love and concern to
resentment, anger, grief, and helplessness.64 “Family caregivers endure negative psychological
and emotional costs because of compromised relationships, sacrifices of one's own family and
career, and social isolation, which in turn results in the deterioration of social support.”65
The New York State Office for the Aging advises caregivers to recognize their breaking
point by noticing warning signs such as “shortness of temper, sleeplessness, physical problems
such as loss of appetite, headaches, fatigue, shortness of breath and dizziness, withdrawal from
people close to you, financial problems, disinterest in normal leisure activities, and inability to
accept help from other.”66 The website explains it is important for the caregiver to take care of
himself/herself because if he/she is not in good health than the other person may suffer.67
The negative impacts to caregiver’s employment, income (retirement and benefits), and
personal health could promote a downward spiral when these individuals are in need of resources
57
See MetLife, supra note 42.
Id.
59
Id.
60
Id.
61
Id.
62
See Id. (illustrating a survey of caregiver’s personal spending limitations due to out of pocket expenses).
63
Id.
64
Time to Care, supra note 7.
65
Staicovici, supra note 4 at 251.
66
Time to Care, supra note 7.
67
Id.
58
10
for their own elderly care. The MetLife study encourages the public and private sector to
develop affordable policies and benefits for working caregivers.68 These policies include;
“Flexible benefits such as flextime, telecommuting, job-sharing, and compressed work weeks;
community-based programs such as respite, adult day care, and caregiver support groups;
information, referral and educational programs; employee and/or employer funded long-term
care insurance; and a more favorable tax environment for caregivers and their employers.”69
Public Incentives for Caregiving Services
“Although family caregivers provide a substantial benefit to society, they are undercompensated for the work they perform.”70 Various public incentives or aid to caregivers
include; Family and Medical Leave Act; National Family Caregiver Support Program (NFCSP)
under the Older Americans Act; and proposed federal and state tax credit.
The Family and Medical Leave Act (FMLA) was adopted in 1993 with a purpose “to
balance the demands of the workplace with the needs of families, to promote the stability and
economic security of families, and to promote national interests in preserving family integrity”71
This Act entitles eligible employed persons to 12 weeks of unpaid leave during any 12 month
period without termination of employment.72 Although FMLA’s protection includes caregivers
to ill parents, its reach is not sufficient to cover the reality of caregiving demands.73 First and
foremost FMLA extends only 12 weeks; the average length of caregiver’s nurturing is eight
years.74 Unpaid leave is often not an option for caregivers who likely take on additional
expenses associated with caring for a relative, while continuing to provide for their own
livelihood. Additionally, the limitations on FMLA’s eligibility depends on being employed at
least 12 months at a workstation with greater than 50 employees75; therefore many caregivers are
not qualified. “FMLA fails to provide comprehensive support for all people who may need to
take time away from work to care for their aging parents.”76
Another proposal to create caregiving incentives is an income tax deduction. A $3,000
tax credit to assist long-term care provided by family members has been proposed by both
Presidents Clinton and Bush.77 Many states are also following the income tax reduction
strategy.78 Of course, income tax credits are incentives only to those who receive a deduction in
the amount owed to the government. “While these existing and proposed tax credits and
68
MetLife, supra note 42.
Id.
70
Staicovici, supra note 4 at 271.
71
29 U.S.C. §§ 2601-2654 (2000) available at http://www.dol.gov/esa/regs/statutes/whd/fmla.htm [hereinafter
FMLA].
72
Id.
73
Wise, supra note 9 at 587.
74
MetLife, supra note 42.
75
FMLA, supra note 69.
76
Wise, supra note 9 at 587.
77
Coleman, supra note 3.
78
Id.
69
11
deductions represent a positive step in governmental support of family caregiving, they exclude
very poor caregivers who do not pay federal income taxes.”79
In October 2000, Congress enacted the National Family Caregiver Support Program
(NFCSP) under the Older Americans Act.80 This program was developed by the Administration
of Aging (AoA) of the United States Department of Health and Human Services in order to offer
direct services aimed at addressing a range of caregiver’s needs.81 These services specifically
include: “Information to caregivers about available services; assistance to caregivers in gaining
access to supportive services; individual counseling, organization of support groups, and
caregiver training to assist caregivers in making decisions and solving problems relating to their
roles; respite care to enable caregivers to be temporarily relieved from their caregiving
responsibilities; and supplemental services, on a limited basis, to complement the care provided
by caregivers.”82 The Federal government allocates funds to the states based on population
proportions for people age 70 and older; the states are required to work with local agencies, such
as aging, community, and faith service providers to adopt programs which offer caregivers relief
through the intended means.83
Through its informational, support, respite, and supplemental services dedication, NFCSP
has the potential to offer huge relief to caregivers. Information and support services are the
building blocks of caregiver’s aid. Lack of information can be a huge barrier for those seeking
assistance. These services provide caregivers with valuable information and support networks so
that they may take advantage of any existing programs as well as gather emotional
encouragement. Respite care is perhaps the greatest relief for caregivers; especially for those
who can not leave their relative by themselves. “Although a wide variety of caregiver programs
have been instituted, numerous studies have shown that family caregivers preferably want relief
or respite from caregiving.”84 Whether respite is provided by a church group donating a few
hours a week, an affordable and trustworthy adult day care, or home health aid attention respite
allows relief so that caregivers may, even temporarily, take a break for themselves. “Caregivers
have reported improved physical and emotional health, whereas respite care has brought a
decline in institutionalization for care recipients.”85 Supplemental services are essential
especially if the care taking continues during illness or the final stages of the relative’s life.86
79
Wise, supra note 9 at 586.
Dept. of Health and Human Services, Administration on Aging, National Family Caregiver Support Program
Resource Room (2004) at http://www.aoa.dhhs.gov/prof/aoaprog/caregiver/overview/overview_caregiver.asp (last
visited Dec. 1, 2004).
81
Id.
82
Id.
83
Id. Eligibility is based on either caring for people ages 60 and higher, or to grandparents or older relative
caregivers who care for a child under 18. Priority is given to caregivers with the greatest social and economic need
as well as to caregivers of people with developmental disabilities. Id.
84
Staicovici, supra note 4 at 252.
85
Id. at 244
86
Additional supplemental services could include home medical visits and treatment for the elderly. Hospice care is
available to people facing a life threatening illness and is often a huge source of aid for caregivers. See Hospice,
The Hospice Concept (2004) at http://www.hospicenet.org/html/concept.html (last visited Dec. 2, 2004).
80
12
Although the potential for NFCSP as an aid to home caregivers is great, its lack of
funding fails to cover those in need.87 For example, the 2001 appropriation of $125 million
amounted to approximately $5 per caregiver.88 The National Council for the Aging advocates
for Congress to double NFCSP spending from its 2001 appropriation by earmarking $250
million for 2005 (President Bush’s request for 2005 spending is $162 million).89 Increasing the
funding of NFCSP will provided much needed relief to caregivers who promote the overall
savings in public dollars by administering primary care of their relatives at home.
State public programs directed at long-term caregiving vary considerably.90 States such
as Pennsylvania, California, Florida, and New Jersey have been regarded as providing the best
respite relief, including voucher pay for services and supplies relating to caregiving. 91 “While
these state programs expand the amount of public support available to adult children who support
their parents, compensation is limited to residents of those few jurisdictions that have recognized
the importance of family caregiving.”92 Each state and locality has vastly different programs and
eligibility requirements. However, increasing demand for respite services is universal.93
Conclusion
Long-term caregiving for a loved one is a responsibility which most caregivers willingly
accept. These duties of love are often detrimental to the caregiver’s own health and economic
status. Due to the great monetary relief of public funds caregivers provide, government should
encourage their work by dedicating aid under NFCSP and related programs, and should alleviate
income burdens through voucher systems providing money for caregiving supplies. Caregiving
should not be discouraged through cohabitation penalties associated with governmental
assistance eligibility, or through the loss of social security earnings and/or health care benefits of
the caregiver.
Gloria continues to be the caregiver of her mother Irma. Irma’s heath has rapidly
deteriorated and the Hospice team has tried to prepare Gloria for her passing. It has been 12
years since Gloria assumed the role of caregiver for her mother; as Irma’s disease progressed the
role has presented trying times. Many people, including family members, have previously
encouraged Gloria to place Irma in a nursing home because the burden is too great. Gloria
refused. She simply reiterated “This is my mother; she will always have a home here.”
87
The National Council for the Aging, Older Americans Act Appropriations: The National Family Caregiver
Support Program, (2004) at
http://www.ncoa.org/attachments/NFCSP.pdf#search='older%20american%20act%20national%20family%20caregi
ver%20support%20program' (last visited Dec. 2, 2004).
88
Id.
89
Id.
90
Terri Whirrett, MSW, Funding for Adult Respite, ARCH National Respite Network and Resource Center, at
http://www.archrespite.org/Funding%20for%20Adult%20Respite%20Booklet.pdf (last visited Dec. 1, 2004)
[hereinafter Whirrett]
91
Id.
92
Wise, supra note 9 at 590.
93
See Whirrett, supra note 88; See also Barbara Coleman, Helping the Helpers: State Supported Services For
Family Caregivers, AARP Public Policy Institute (2000)(providing a detailed look at various state programs) at
http://research.aarp.org/health/2000_07_help.pdf#search='coleman%20barbara%20helping%20helpers%20state%20
supported%20services%20for' (last visited Dec. 3, 2004).
13