Volume 6 Issue 1, May 2006
Family Matters
A Newsletter for Wisconsin Policymakers
A Wisconsin Family Impact Seminars Publication
Families: The Backbone to
Long-Term Care
What Support Programs are Available for
Family Caregivers in Wisconsin & Other States?
Families are the backbone to long-term care. Families have
always provided care to the aged and those with mental and
physical disabilities, but historically family caregiving was
short-lived. Given medical technologies that keep people alive
longer, family caregiving now lasts longer and has become
essential to our health and long-term care system.1
In Wisconsin, three main programs provide support to family
caregivers for adults (excluding those with developmental
disabilities): the Family Caregiving
Support
Program
Volume
6 Issue
1, May 2006
administered by the county aging offices; the Community
Options Program-Waiver administered by the Area
Agencies on Aging and county departments of human or
social services; and the Alzheimer’s Family and Caregiver
How Much Informal Long-Term
Care is Occurring?
SupportPolicymakers
Programs administered by county health or aging
A Newsletter
for Wisconsin
departments. These programs are summarized in Table 1.
Informal care, provided primarily
by family
and friends,
is Seminars Publication
A Wisconsin
Family
Impact
the only care received by almost 80% of adults with long-term
Table 1. Wisconsin Programs for Family Caregivers
care needs (see Figure 1).2 These national statistics mirror
Community
Alzheimer’s
Family Caregiver
Options
Family/Caregiver
what is happening in Wisconsin.3
Support Program
Family Matters
Figure 1: Type of Care Received by Adults with
Long-Term Care Needs Living in the Community
1994-1995
Both Formal
& Informal
14%
Funding
Support
Medicaid HCBS
waiver
State general fund
$2.7 million
$144 million
$1.9 million
60+
18+
Family caregiver
Care receiver
Both caregiver and
care receiver
Expenditures (FY 2003)
Care Receiver Age
Client
Formal Only
8%
Program-Waiver
Local/county funds
OAA, Title III-E
Services provided (partial list)
Informal Only
78%
Source: Health Policy Institute, Georgetown University.
What is the Value of Long-Term Care in Wisconsin?
Without family caregivers, Medicaid and other health care
costs would be much higher. In a recent study, one-half
million caregivers in Wisconsin are providing almost 558
million hours each year caring for ill and disabled adults.
The value of this informal family caregiving in Wisconsin is
estimated at over $4.9 billion—two to three times the amount
spent by Medicaid.4
Given its economic value, it is no surprise that political
observers have recommended reframing the long-term care
debate to supplementing and strengthening family caregiving.
Education & training
•
•
•
Information & assistance
•
•
•
Respite care
•
•
•
Assistive technology
•
•
Care management
•
•
Counseling
•
•
Family consultation
•
•
Home modification/repairs
•
•
Homemaker/chore/
personal care
•
•
Support groups
•
Respite cap
•
116 hours/year
no cap
$4,000/year
Families have choice of
respite providers
•
•
•
Voucher or budget
for respite and/or
supplemental services
•
Consumer-directed options
Voucher or budget for
respite only
Direct payments to family
members for purchase of
goods or services
•
•
•
•
Menu of services from which
caregivers can choose
•
Services families can be paid to provide
Respite
•
•
•
Personal
•
•
•
Homemaker/chore
•
Other
Program Assesses
•
Both family
caregiver and
care receiver
Care receiver
Both family
caregiver and
care receiver
Source: Family Caregiver Alliance study by Feinberg et al. (2004).7
What Toll Does Long-Term Care Take on Family
Caregivers?
How are States Responding to the Needs of Family
Wisconsin Family Impact Seminars
Caregivers?
Caregiving
takesResearch
a financial and
physical
toll on
caregivers.
Where
Meets
Policy
and
Families Matter
Out-of-pocket medical expenses are 2.5 times more for a
In 2004, the National Governors Association (NGA) released
family with a loved one with a disabling or chronic condition.
a report on strategies states are using to support family
Compared to non-caregivers, family caregivers providing 36
caregivers.8 We’ve added what Wisconsin is doing.
or more hours of care weekly experience more depression or
anxiety and turn to prescription drugs 2 to 3 times more often.5
(1) Using state and federal funds to support respite care
Without adequate financial and emotional support, family
caregivers can put their own health and well-being in
jeopardy. Respite, or occasional relief from the stresses of
caregiving, has been shown to help avoid abuse, neglect, and
costly out-of-home placements. In emerging evidence, respite
care also reduces the likelihood of divorce.6
and family caregivers
All states provide the service that family caregivers say they
need most–respite and day care to provide time away from
the stresses of caregiving.9 However, the amount of respite
varies from state to state and from program to program. A
March 2006 report highlighted two innovations.10
Wisconsin Family Impact Seminars
Where Research Meets Policy and Families Matter
Family Matters, Vol 6 No 1
Wisconsin Family Impact Seminars
University of Wisconsin-Madison/Extension
1300 Linden Drive, Room 130
Madison, WI 53706-1524
e!
Car
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Familie licymakers
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The Va A Brief for Po
Family Matters is a newsletter for state policymakers published by the Wisconsin Family Impact Seminars (WISFIS). WISFIS connects research and policymaking, and examines the impact
of policies on families. The seminars provide objective, state-of-the-art
information on a range of policy options. WISFIS is a joint effort of
University of Wisconsin-Extension and the Center for Excellence in
Family Studies in the School of Human Ecology at the University of
Wisconsin-Madison.
This newsletter was written by Karen Bogenschneider and
Heidi Normandin, and produced by Jenn Seubert. The director of
the Wisconsin Family Impact Seminars is Professor and Extension
Specialist Karen Bogenschneider.
For further information, contact Heidi at (608) 262-5779 or
[email protected], or Karen at (608) 262-4070 or
[email protected]. You can access WISFIS briefing reports at:
http://www.familyimpactseminars.org/wifis.htm
Family Matters is on the web at:
http://www.familyimpactseminars.org/newsletters.htm
This newsletter can be copied and distributed without permission. Please notify
the authors of how this newsletter is used.
First, states are taking a more “family-centered” approach to
long-term care by considering as the client both the person
receiving care and the caregiver. When family and friends are
physically and mentally healthy, they are more able to care for
their loved one and to provide better care. One new direction
states are taking is to uniformly assess the needs of caregivers
in their home and community-based services programs. To date,
only 5 states that conduct uniform assessments (not Wisconsin)
include a caregiver component.11
es Matter
Second, states are building collaborations between the aging
network and health care providers. Because health care providers
are often the first entry into the long-term care system, they can
(a) identify when caregiving may be impairing the health of
caregivers, and (b) connect caregivers with support services.12
(2) Maximizing choice for consumers and caregivers
States are moving toward giving care recipients more choices
and greater control of their long-term care by offering options
such as vouchers for purchasing services, paying family
members to provide care, and offering a variety of respite care
arrangements. Cash and Counseling, perhaps the most wellknown of these efforts, was piloted by Arkansas, Florida,
and New Jersey. With the passage of the 2005 Deficit
Reduction Act in February 2006, states now can offer these
“individual budget” programs without a federal waiver.13
Wisconsin is one of 10 states that already had an individual
budget program in place before February. Wisconsin offers
some aspects of consumer direction in all three of its main
family caregiver support programs (See Table 1). In addition,
Family Care offers Self Directed Supports (SDS), a voluntary
program for Family Care beneficiaries. Most (91%) of the
expenditures have been used for personal care, supportive
home care, or other home health care.14 The average SDS
expenditure per member is $700 per month. In February 2005,
there were 2,087 Family Care beneficiaries participating in
some form of SDS; most were in Milwaukee.
•In 2002, Wisconsin ranked 8th in the nation for the
percent of people aged 85 and older.
•In 2004-2005, Wisconsin’s Medicaid program spent
nearly $2.2 billion on long-term care, about half on
home and community-based care (48%) and half for
institutionalized care (52%).
•In 2003, Wisconsin ranked 11th highest in the nation
for the percent of elderly in a nursing home.
•The elderly without family caregivers are 7 times more
likely to be in a nursing home.
•In Wisconsin, one-half million citizens are providing
almost 558 million hours each year caring for ill and
disabled adults—at an estimated value of over
$4.9 billion.
(3) Expanding Family and Medical Leave
The federal Family and Medical Leave Act guarantees
employees of businesses with at least 50 employees 12
weeks of unpaid leave each year to care for a newborn,
newly adopted child, or seriously ill family member. States
have expanded their laws in several ways.15 Listed below are
provisions that Wisconsin does not currently provide:
• Oregon and Vermont expanded leave provisions to
workplaces with fewer than 50 employees.
• California, Connecticut, Louisiana, Oregon, Rhode
Island, and Tennessee extended the 12-week leave period.
• Washington allows public and private sector employees
to use family leave to care for a seriously ill grandparent.
Wisconsin does not, unless the grandparent is raising a child.
• No state covers leave for a caregiver whose child or elder is
not seriously ill, but is too sick to go to child care or day care.
(4) Improving tax treatment of caregiver expenses
In Wisconsin, caregivers can count the care recipient as a
dependent if they provide more than half of the care. However,
Wisconsin citizens cannot deduct caregiver expenses on their
state income taxes.
References are at http://www.familyimpactseminars.org/newsletters.htm.
To read the entire National Governors Association report, visit
http://www.nga.org/Files/pdf/0406AgingCaregivers.pdf.
To read A Policymakers Guide to Long-Term Care in Wisconsin:
Public, Private, and Family Perspectives, from the recent Wisconsin
Family Impact Seminar report on long-term care reform, visit
http://www.familyimpactseminars.org/fis23.htm.
To read the Family Caregiver Alliance 50-state study, visit
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1220.
always provided care to the aged and those with mental and
physical disabilities, but historically family caregiving was
short-lived. Given medical technologies that keep people alive
longer, family caregiving now lasts longer and has become
essential to our health and long-term care system.1
caregivers for adults (excluding those with developmental
disabilities): the Family Caregiving Support Program
administered by the county aging
offices;6the
Community
Volume
Issue
1, May 2006
Options Program-Waiver administered by the Area
Agencies on Aging and county departments of human or
social services; and the Alzheimer’s Family and Caregiver
How Much Informal Long-Term Care is Occurring?
Support Programs administered by county health or aging
A Newsletter for Wisconsin
Policymakers
departments.
These programs are summarized in Table 1.
Informal care, provided primarily by family and friends, is
the only care received by almost
80% of adults
with long-term
A Wisconsin
Family
Impact Seminars
Publication
Table
1. Wisconsin Programs for Family Caregivers
care needs (see Figure 1).2 These national statistics mirror
Community
Alzheimer’s
Family Caregiver
Options
Family/Caregiver
what is happening in Wisconsin.3
Support Program
Family Matters
Program-Waiver
Support
References for Family Matters, Volume 6,Local/county
Issuefunds
1 Medicaid HCBS
Funding
State general
Families:
TheReceived
Backbone
to
What
Support
Programs
are
Available
forfund
OAA,
Title III-E
waiver
Figure
1: Type of Care
by
Adults
with
“The Value of Families in Long-Term Care”
Expenditures (FY 2003)
$144 million
million
Long-Term Care
Needs LivingCare
in the Community
Long-Term
Family
Caregivers$2.7inmillion
Wisconsin
& Other$1.9
States?
Care Receiver Age
60+
18+
1994-1995
1
Feinberg, L., Horvath, J., Hunt, G., Plooster, L., Kagan, J., Levine, C., Lynn, J., et al. (2003, December 1). Family caregiving and public policy:
Principles
Both caregiver
and
Family caregiver
Care receiversupport to family
Families
are Both
theBethesda,
backbone
to National
long-term
care.for
Families
have
InClient
Wisconsin,
three main
programs provide
Formal
OnlyAlliance
care receiver
for change.
Caregiving.
Retrieved May
15,
2006 from http://www.caregiving.org/data/principles04.pdf.
Formal MD:
8%and those with mental and
Services provided
list)(excluding those with developmental
always provided
care to the aged
caregivers
for(partial
adults
& Informal
Education & training
•
•
•
2
14%
physical
disabilities,
historically
family
disabilities):
Caregiving
Support
Program
Thompson,
L. (2004,but
March).
Long-term
care:caregiving
Support for was
family caregivers.
Washington,the
DC:Family
Georgetown
University
Long-Term
Care Financing
Information & assistance
•
•
•
Project.Given
Retrieved
December
20, 2005 from
short-lived.
medical
technologies
that http://ltc.georgetown.edu/pdfs/caregivers.pdf.
keep people alive
administered
by the county• aging offices;
Respite care
• the Community
•
Assistive technology
•
•
longer,
family
caregiving
now
lasts
longer
and
has
become
Options
Program-Waiver
administered
by
the
Area
3
Care management
•
•
Wisconsin Department of Health and Family Services.
of older Wisconsin residents:
A summary of statewide survey
1 (2004, November). Profiles
essential to our health and long-term care system.
Agencies
on Aging and county
departments of human or
Counseling
•
•
data from 2001-2002. Madison, WI: Division of Disability and Elder Services,
Bureau of Aging and Long
Term Care Services. Retrieved
social
services; and the Alzheimer’s
Family and Caregiver
Family consultation
•
•
December 15, 2005 from http://dhfs.wisconsin.gov/aging/demographics/profiles.pdf.
Home modification/repairs
•
•
How Much Informal Long-Term Care is Occurring?
Support
Programs administered
by county health or aging
Homemaker/chore/
• 1.
4
departments.
These
are summarized
in Table
Feinberg,care,
L., Newman,
Gray, L., Kolb,
K., & Fox-Grage,
W. is
(2004, November).
The state
of theprograms
states• in family
caregiver support:
A 50-state
personal care
Informal
providedS.,primarily
by family
and friends,
SupportRetrieved
groups
•
Informal
Only
study: Wisconsin state profile. San Francisco,
CA:
Family Caregiver Alliance.
May 16, 2005• from http://www.caregiver.org/caregiver/
the only
care received by almost 80% of78%
adults with long-term
Respite
cap 1. Wisconsin
116 hours/year
cap
$4,000/year
Table
Programs fornoFamily
Caregivers
jsp/content_node.jsp?nodeid=1276.
Consumer-directed options
care needs (see Figure 1).2 These national statistics mirror
Community
Alzheimer’s
Source: Health Policy Institute,
Family Caregiver
3 Georgetown University.
Families have choice of
Options
Family/Caregiver
5
what
is happening
in Wisconsin.
•
•
Feinberg,
L., Horvath,
J., Hunt, G., Plooster, L., Kagan, J., Levine, C., Lynn,respite
J., etproviders
al. (2003, December
1).•Program
Family caregiving
and public
policy:
Support
Program-Waiver
Support
for change. Bethesda, MD: National Alliance for Caregiving. Voucher
Retrieved
May 15, 2006
from http://www.caregiving.org/data/
Local/county
funds
Medicaid HCBS
or budget
WhatPrinciples
is the Value
of Long-Term Care in Wisconsin?
Funding
State general fund
OAA, Title III-E
waiver
Figure 1: Type of Care Received by Adults with
principles04.pdf.
for respite and/or
supplemental services
•
•
Expenditures (FY 2003)
$2.7 million
$144 million
$1.9 million
Long-Term
Care Needs
Living and
in the
Community
Without
family caregivers,
Medicaid
other
health care
Voucher
or budget
6
Care
Receiver
Agefor December 1).
60+Family caregiving
18+
•
1994-1995
Feinberg,
L.,
Horvath,
J.,
Hunt,
G.,
Plooster,
L.,
Kagan,
J.,
Levine,
C.,
Lynn,
J.,
et
al.
(2003,
and
public
policy:
respite only
costs would be much higher. In a recent study, one-half
Both caregiver and
Client
Family
caregiver
Care
receiver
Principles
for
change.
Bethesda,
MD:
National
Alliance
for
Caregiving.
Retrieved
May
15,
2006
from
http://www.caregiving.org/data/
Direct payments to family
Formal Only
care receiver
million caregivers
in Wisconsin
are providing almost 558
Both Formal
members for purchase of
•
•
principles04.pdf.
Services provided (partial list)
& Informal
million hours each
year caring8%
for ill and disabled adults.
goods or services
Education & training
•
•
•
14%
Menu of services from which
The
value of
informal
family
caregiving
in Wisconsin
is November).
7
•
Informationcan
& assistance
•
Feinberg,
L.,this
Newman,
S., Gray,
L., Kolb,
K., & Fox-Grage,
W. (2004,
The
state of the states• in family caregiver
support: A 50-state
caregivers
choose
RespiteRetrieved
care
• from http://www.caregiver.org/caregiver/
•
•
estimated
over $4.9
billion—two
to three times
the amount
study:atWisconsin
state
profile. San Francisco,
CA: Family
Caregiver Alliance.
16,to2005
Services
families canMay
be paid
provide
Assistive technology
•
•
spentjsp/content_node.jsp?nodeid=1276.
by Medicaid.4
Respite
•
•
•
Care management
•
•
Personal
•
•
•
Counseling
•
•
Homemaker/chore
•
8
Center for Best Practices Aging Initiative. (2004, June). State support for family
workers. Washington,
DC:•
Familycaregivers
consultation and paid home-care
•
Other
•
National Governors Association. Retrieved December 19, 2005 from http://preview.nga.org/Files/pdf/0406AgingCaregivers.pdf.
Home modification/repairs
•
•
Both family
Both family
Homemaker/chore/
Program
Assesses
caregiver
and
Care
receiver
caregiver
•
• and
personal care
care receiver
receiver
9
Ooms, T. & Preister, S. (1988). A strategy for strengthening families: Using family
criteria in policymaking
and program evaluation (acare
report
of
Support groups
•
•
Informal Only
7
Given its economic value, it is no surprise that political
observers have recommended reframing the long-term care
debate to supplementing and strengthening family caregiving.
Family
Alliance study by Feinberg et al. (2004).
Family Criteria Task Force). Washington,
DC: American Association ofSource:
Marriage
andCaregiver
Family Therapy.
Respite cap
116 hours/year
no cap
78%
the
What Toll Does Long-Term Care Take on Family
Consumer-directed options
Caregivers?
How
are
States
Responding
thecaregiver
Needs support.
of Family
10
Source:
Health Policy
Institute,
Georgetown
University.
Feinberg,
L., Wolkwitz,
K., &
Goldstein,
C. (2006,
March). Ahead of the curve:
Emerging
and practices into
family
Families
have choicetrends
of
•
•
•
respite
providers
Caregivers?
Washington,
American
Association
Retired
Persons Public Policy Institute. Retrieved May 15, 2006 from http://assets.aarp.org/rgcenter/
Caregiving
takesDC:
a financial
and
physicaloftoll
on caregivers.
Voucher or budget
Whatil/2006_09_caregiver.pdf.
is the Value
Long-Term
Wisconsin?
Out-of-pocket
medicalofexpenses
are 2.5Care
timesinmore
for a
respite and/or
•
•
Infor2004,
the National Governors
Association (NGA) released
supplemental services
family
with
a
loved
one
with
a
disabling
or
chronic
condition.
Without
family
caregivers,
Medicaid
and
other
health
care
11
a
report
on
strategies
states
are
using
to
support
family
Feinberg, L., Newman, S., Gray, L., Kolb, K., & Fox-Grage, W. (2004, November).
Voucher or The
budgetstate
for of the states in family caregiver support: A 50-state
•
Compared
tobe
non-caregivers,
family
caregivers
providing
36 May 16,
respite
costs study.
would
much higher.
In a recent
study,
one-half
caregivers.
We’ve added what Wisconsin
is doing.
San
Francisco,
CA: Family
Caregiver
Alliance.
Retrieved
2005only
from8http://www.caregiver.org/caregiver/jsp/content_node.
Direct payments to family
or
more
hours of care
weekly experience
more depression
million
caregivers
in Wisconsin
are providing
almost 558or
jsp?nodeid=1276.
members for purchase of
•
•
anxiety
turn
to prescription
drugs
to 3disabled
times more
often.5
million and
hours
each
year caring for
ill 2and
adults.
goods
or services
(1)
Using
state and federal funds to support respite care
12
L.,this
Wolkwitz,
K., family
& Goldstein,
C. (2006,
Ahead
Emerging
Menu of
services fromtrends
which and practices in family caregiver support.
TheFeinberg,
value of
informal
caregiving
inMarch).
Wisconsin
isof the curve:
•
and
family
caregivers
canRetrieved
choose
Without
adequateDC:
financial
and
emotional
support,
familyPublic Policycaregivers
Washington,
American
Association
of
Retired
Persons
Institute.
May 15, 2006 from http://assets.aarp.org/rgcenter/
estimated at over $4.9 billion—two to three times the amount
Services families can be paid to provide
il/2006_09_caregiver.pdf.
caregivers
can put their own health and well-being in
All
states provide the service
that family• caregivers say• they
spent by Medicaid.4
Respite
•
jeopardy. Respite, or occasional relief from the stresses of
need
most–respite
and
day
Personal
• care to provide
• time away from
•
13
Spillman,
B.
Black,
K. J.,
& no
Ormond,
B.A.that
(2006,
April). Beyond
and
Counseling: An inventory9 of individual budget-based
community
Homemaker/chore
•
caregiving,
hasC.,been
shown
to
help
avoid
abuse,
neglect,
and Cashthe
Given
its economic
value,
it is
surprise
political
stresses
of
caregiving.
However,
the
amount
of
respite
long-term care programs for the elderly. Washington, DC: Kaiser Commission
May 2, 2006 from
Other on Medicaid and the Uninsured. Retrieved
•
costly
out-of-home
placements.
In emerging
evidence,care
respite
observers
have recommended
reframing
the long-term
varies from state to state
and
A
Both
familyfrom program to program.
Both family
http://www.kff.org/medicaid/upload/7485.pdf.
6
Program Assesses
caregiver and
Care receiver
10 caregiver and
care
also
the likelihood
of divorce.family caregiving.
debate
to reduces
supplementing
and strengthening
March
2006 report highlighted
two
innovations.
care receiver
care receiver
What Toll Does Long-Term Care Take on Family
Wisconsin Family Impact Seminars
Caregivers?
Source: Family Caregiver Alliance study by Feinberg et al. (2004).7
$4,000/year
continued
How are States Responding to the Needs of Family
Where Research Meets Policy and Families Matter
Caregivers?
Caregiving takes a financial and physical toll on caregivers.
Out-of-pocket medical expenses are 2.5 times more for a
family with a loved one with a disabling or chronic condition.
In 2004, the National Governors Association (NGA) released
a report on strategies states are using to support family
always provided care to the aged and those with mental and
caregivers for adults (excluding those with developmental
physical disabilities, but historically family caregiving was
disabilities): the Family Caregiving Support Program
short-lived. Given medical technologies that keep people alive
administered by the county aging offices; the Community
14
Division
of Health
Care Financing
Division
of has
Disability
and Elder Services.
(2005,
February 23). Wisconsin
Partnership
Program
longer,
family
caregiving
now lasts&longer
and
become
Options
Program-Waiver
administered
by the
Area
1
(PowerPoint
presentation).
Madison,
WI:
Department
of
Health
and
Family
Services.
Retrieved
May
2,
2006
from
http://www.dhfs.wisconsin.
essential to our health and long-term care system.
Agencies on Aging and county departments of human or
gov/medicaid4/presentations/disability/disability_partnership.ppt.
social services; and the Alzheimer’s Family and Caregiver
How
Much
Informal
Long-Term
Care
is
Occurring?
Support Programs administered by county health or aging
15
Center for Best Practices Aging Initiative. (2004, June). State support for family caregivers and paid home-care workers. Washington, DC:
departments. These programs are summarized in Table 1.
National
19, 2005
Informal
care,Governors
providedAssociation.
primarily Retrieved
by familyDecember
and friends,
is from http://preview.nga.org/Files/pdf/0406AgingCaregivers.pdf.
the only care received by almost 80% of adults with long-term
Table 1. Wisconsin Programs for Family Caregivers
2
care needs (see Figure
1).
These
national
statistics
mirror
Community
Alzheimer’s
References for Quick Facts in Family Matters, Volume
6, Number
1
Family Caregiver
Options
Family/Caregiver
what is happening in Wisconsin.3
Support Program
Program-Waiver
Funding
In 2002,
Wisconsin
8 in by
theAdults
nation
for the percent
of people aged 85 and older.
Figure
1: Type ofranked
Care Received
with
Local/county funds
OAA, Title III-E
th
Medicaid HCBS
waiver
Support
State general fund
Expenditures
2003)
$2.7 million
$144
million
$1.9 million
Gibson,Long-Term
M., Gregory,Care
S., Houser,
& Fox-Grage,
W. (2004). Across the states:
Profiles (FY
of long-term
care.
Washington,
DC:
American Association
NeedsA.,
Living
in the Community
Age
60+
18+
of Retired Persons Public
Policy Institute. Retrieved December 13, 2005 Care
fromReceiver
http://assets.aarp.org/rgcenter/post-import/d18202_2004_ats.pdf.
1994-1995
Both caregiver and
Client
Family caregiver
Care receiver
Formal Only
care receiver
Both Formal
8%
In 2004-2005,
Wisconsin’s
Medicaid
program
spent
nearly
$2.2
billion
on
long-term
care, about half on
Services provided (partial list)
& Informal
Education & training
•
•
•
14%
home and community-based
care (48%) and half for institutionalized
care (52%).
Information & assistance
•
Assistive technology
•
•
•
Source: Wisconsin Legislative Fiscal Bureau (December, 2005), based on information
from the Wisconsin Department
of Health
Respite care
•
• and Family Services.
•
Care management
•
In 2003, Wisconsin ranked 11th highest in the nation for
the percent of elderly
in a nursing home.
Counseling
•
•
•
•
Statehealthfacts.org. (n.d.) Total certified nursing facility residents as a percentFamily
of the
population 65 years and
older, 2003. Washington, DC:• The
consultation
•
Henry J. Kaiser Family Foundation. Retrieved December 13, 2005 from http://www.statehealthfacts.org/cgi-bin/healthfacts.cgi?
Home modification/repairs
•
•
Homemaker/chore/
personal care
•
•
The elderly without family caregivers
are 7 times more Support
likely
to be in a nursing
home.
groups
•
Informal Only
•
Respite
116 hours/year (Eds.), no
cap
$4,000/year
Stone, R.I. (1999, February). Long-term care:78%
Coming of age in the 21st century.
In J.cap
Olsen & K. Bogenschneider
Long-term
care:
State
Consumer-directed options
policySource:
perspectives
(Wisconsin
Family
ImpactUniversity.
Seminar Briefing Report, pp. 1-11). Madison, WI: University of Wisconsin Center for Excellence
Health Policy
Institute,
Georgetown
Families have choice of
•
•
•
in Family Studies.
respite providers
What is the Value of Long-Term Care in Wisconsin?
Voucher or budget
for respite and/or
•
“In Wisconsin, one-half million citizens are providing almost
558 million hours
each year caring for• ill
supplemental services
Without family caregivers, Medicaid and other health care
or budget for
and disabled adults—at an estimated value of over $4.9Voucher
billion.
•
respite only
costs would be much higher. In a recent study, one-half
Feinberg, L., Newman, S., Gray, L., Kolb, K., & Fox-Grage, W. (2004, November). The state of the states in family caregiver support: A 50-state
Direct payments to family
million
caregivers
in
Wisconsin
are
providing
almost
558
study: Wisconsin state profile. San Francisco, CA: Family Caregiver Alliance.
Retrieved
16, 2005• from http://www.caregiver.org/caregiver/
members
for purchaseMay
of
•
million
hours
each
year
caring
for
ill
and
disabled
adults.
goods or services
jsp/content_node.jsp?nodeid=1276.
Menu of services from which
The value of this informal family caregiving in Wisconsin is
•
caregivers can choose
estimated at over $4.9 billion—two to three times the amount
Services families can be paid to provide
spent by Medicaid.4
Respite
•
•
•
Given its economic value, it is no surprise that political
observers have recommended reframing the long-term care
debate to supplementing and strengthening family caregiving.
What Toll Does Long-Term Care Take on Family
Caregivers?
Caregiving takes a financial and physical toll on caregivers.
Out-of-pocket medical expenses are 2.5 times more for a
family with a loved one with a disabling or chronic condition.
Compared to non-caregivers, family caregivers providing 36
or more hours of care weekly experience more depression or
anxiety and turn to prescription drugs 2 to 3 times more often.5
Without adequate financial and emotional support, family
caregivers can put their own health and well-being in
jeopardy. Respite, or occasional relief from the stresses of
caregiving, has been shown to help avoid abuse, neglect, and
costly out-of-home placements. In emerging evidence, respite
care also reduces the likelihood of divorce.6
Personal
•
Homemaker/chore
•
•
Other
Program Assesses
•
•
Both family
caregiver and
care receiver
Care receiver
Both family
caregiver and
care receiver
Source: Family Caregiver Alliance study by Feinberg et al. (2004).7
How are States Responding to the Needs of Family
Caregivers?
In 2004, the National Governors Association (NGA) released
a report on strategies states are using to support family
caregivers.8 We’ve added what Wisconsin is doing.
(1) Using state and federal funds to support respite care
and family caregivers
All states provide the service that family caregivers say they
need most–respite and day care to provide time away from
the stresses of caregiving.9 However, the amount of respite
varies from state to state and from program to program. A
March 2006 report highlighted two innovations.10
Wisconsin Family Impact Seminars
Where Research Meets Policy and Families Matter