Ten Years of the National Family Caregiver
Support Program: Looking Back & Looking Forward
Illinois Governor’s Conference on Aging
December 8, 2011
Chicago, IL
The National Family Caregiver
Support Program
2
The National Family Caregiver Support
Program (NFCSP)
• Created in the 2000 Reauthorization of the
Older Americans Act
• Focus on Caregiver vs. Care Recipient
• General Provisions of Title III Apply
– Services delivery system
– Organization and structure (SUA, AAA, LSPs)
– Intrastate Funding Formula
3
The NFCSP – 10 Years of Growth
• Gradual increases in funding
– $125 million initial appropriation
– $154 million for FY 2010
– $192.2 million for FY 2012 (requested)
• Projects of National Significance & Innovation
– New approaches
– Effectiveness of programs
– Quality and improvement through evaluation,
training, TA and research
• 2006 Amendments
– Care Recipients with Alzheimer’s Disease of any age
– Lowered age for grandparents/other relatives to 55
– Inclusion of older caregivers (55+) of individuals with
disabilities (18-59)
4
NFCSP 10th Anniversary
• November 17, 2010 – 10th Anniversary
Celebration
• Year of the Family Caregiver
• www.celebratingfamilycaregivers.org
–
–
–
–
Calendar
National, State, Local Events
Tools, resources
Video Testimonials
5
Program Impact
• Who Do We Serve?
–
–
–
–
675,000 caregivers
1/3 work full time
Primarily Women (73%)
Elderly themselves
• 54% age 60+
• 22% age 75+
– 17% live in rural areas
– Grandparents
• 81% female
• 84% age 60-74
• What They Tell Us?
– 84% receive respite
– 45% said respite was
most helpful
– 75% reported less stress
– 85% reported
caregiving was easier
– 95% reported service
quality as good to
excellent
6
FY 2009 COP Total Expenditures % by Service in States with 1,700,000+
Persons 60+ as estimated in 2009
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Information Services
Access Assistance
Supplemental Services
Respite Care
Counseling
MI
IL
OH
PA
TX
NY
FL
CA
50 States +
DC, PR &
GU
$237,105
$389,312
$136,524
$0
$1,494,075
$659,976
$137,360
$3,354,027
$18,124,809
$1,027,016
$2,283,555
$1,358,942
$3,561,556
$2,382,486
$2,914,406
$764,858
$3,921,640
$42,632,247
$94,376
$249,151
$574,010
$268,516
$2,028,269
$1,352,414
$1,086,311
$2,226,953
$18,677,229
$9,860,544
$1,338,298
$2,534,550
$6,524,151
$2,755,773
$4,974,213
$4,732,218
$5,174,607
$90,663,118
$934,062
$1,066,596
$569,015
$396,744
$820,233
$2,307,470
$1,268,017
$5,192,661
$23,829,895
7
IL COP Total Expenditures, FY 2005-2009
$6,000,000
$5,000,000
$4,000,000
$3,000,000
$2,000,000
$1,000,000
$0
Illinois
Illinois
Illinois
Illinois
Illinois
2005
2006
2007
2008
2009
$1,883,567
$1,663,198
$1,821,409
$420,747
$389,312
Access Assistance
$748,103
$701,814
$677,788
$2,485,845
$2,283,555
Supplemental Services
$461,505
$268,085
$536,418
$511,661
$249,151
Respite Care
$1,608,673
$1,439,816
$1,334,756
$1,373,589
$1,338,298
Counseling
$1,494,933
$1,412,146
$1,352,740
$1,123,450
$1,066,596
Information Services
8
FY 2009 COP Program Income Received by Service in States with
1,700,000+ Persons 60+ as estimated in 2009
$1,000,000
$900,000
$800,000
$700,000
$600,000
$500,000
$400,000
$300,000
$200,000
$100,000
$0
MI
IL
OH
PA
TX
NY
FL
CA
Information Services
$7,271
$200
$0
$0
$3,840
$0
$3,023
$1,465
Access Assistance
$9,592
$1,429
$6,261
$0
$260
$0
$562
$44,728
Supplemental Services
$0
$94
$29,170
$0
$1,678
$32,621
$42,470
$69,857
Respite Care
$826,188
$7,047
$114,315
$0
$7,528
$119,980
$304,342
$102,197
Counseling
$36,535
$4,168
$25,605
$0
$0
$55,657
$104,662
$106,018
9
FY 2009 COP Expenditures per Unit by Service in States with 1,700,000+
Persons 60+ as estimated in 2009
$200.00
$180.00
$160.00
$140.00
$120.00
$100.00
$80.00
$60.00
$40.00
$20.00
$0.00
MI
IL
OH
PA
TX
NY
FL
CA
50 States +
DC, PR &
GU
Counseling
$46.22
$59.66
$59.20
$61.01
$69.90
$77.33
$26.18
$95.13
$57.48
Respite Care
$12.14
$10.27
$12.09
$73.51
$8.58
$11.72
$13.64
$32.72
$14.67
Supplemental Services
$469.53
$159.10
$2.32
$935.60
$12.63
$31.07
$13.87
$121.60
$15.22
Access Assistance
$114.69
$25.88
$112.68
$282.00
$17.18
$54.38
$45.61
$79.34
$43.63
Information Services
$90.83
$39.99
$2.47
$0.00
$7.41
$9.15
$95.32
$417.90
$6.99
* IL ranks 47th out of 53 in Respite Expenditures/Unit
10
FY 2009 COP Units per Client by Service in States with 1,700,000+
Persons 60+ as estimated in 2009
200
180
160
140
120
100
80
60
40
20
0
MI
Counseling
IL
OH
PA
TX
NY
FL
CA
50 States +
DC, PR &
GU
7.7
2.9
1.1
1.3
2.2
1.5
12.1
5.9
3.3
199.1
58.3
150.5
18
110.6
86.4
102.1
63.4
95.6
Supplemental Services
2.8
2.1
285.9
1.1
21.5
7.2
36.5
10.4
28.6
Access Assistance
1.4
2.4
7.1
2.6
8.6
3.8
1.2
2.7
1.6
Information Services
8.2
1.1
1.2
0
0
0.7
0
0
0.1
Respite Care
* IL ranks 46th out of 53 in Respite Units/Client
11
FY 2009 COP Clients by Age, Regions V & VII
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
IA
IL
IN
Total Age Missing
138
1,012
3
Age 85+
246
557
323
Age 75-84
569
1,248
408
Age 60-74
890
3,472
Under 60
872
2,753
KS
NE
OH
WI
50 States
+ DC, PR
& GU
24
2
6,384
195
43,837
108
63
416
149
10,861
329
147
871
332
26,092
696
828
316
1,422
712
52,190
701
811
408
1,500
744
59,475
MI
MN
2
0
246
54
762
138
202
1,111
435
465
350
2,274
325
308
2,321
MO
1
FY 2009 COP Clients by Relationship, Regions V & VII
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
IA
IL
IN
KS
MI
MN
MO
NE
OH
WI
50 States +
DC, PR &
GU
Relationship Missing
137
3,599
536
179
1,306
1,719
346
0
2,019
934
72,530
Non-Relative
439
0
32
47
241
12
0
125
612
61
6,682
Other Relative
302
0
83
60
709
56
0
100
1,240
67
13,349
Daughter
833
2,048
418
241
2,010
159
734
333
4,466
453
46,252
Son
248
615
122
60
607
57
264
151
1,085
161
13,850
Wife
496
1,949
191
205
1,161
145
466
110
588
277
25,751
Husband
260
831
142
124
434
68
290
117
583
179
14,466
13
FY 2009 – IL COP Gender, Race & Rural
• Gender:
•70% Female,
•20% Male and
•10% Gender Missing
• Race:
•75% White, not Hispanic,
•10% Black/African American;
• 2% White, Hispanic;
• 1% Two or More Races and
•12% Race Missing
•24% Rural
14
FY 2009 Percentage of Total NFCSP Expenditures on GRG in States with
1,700,000+ Persons 60+ as estimated in 2009
25.00%
20.00%
15.00%
10.00%
5.00%
0.00%
MI
IL
OH
PA
TX
NY
FL
CA
% Total Exp on GRG
12.29%
5.75%
0.06%
5.07%
4.00%
3.98%
6.96%
7.08%
National Average 50 States + DC, PR & GU
6.22%
6.22%
6.22%
6.22%
6.22%
6.22%
6.22%
6.22%
15
100%
FY 2009 GRG Total Expenditures % by Service in States with 1,700,000+
Persons 60+ as estimated in 2009
80%
60%
40%
20%
0%
Information Services
MI
IL
OH
PA
TX
NY
FL
CA
50 States +
DC, PR &
GU
$0
$0
$62,253
$7,216
$50,521
$217,614
$1,843,022
$0
$10,232
Access Assistance
$357,103
$54,360
$0
$215,863
$99,270
$64,911
$7,067
$164,785
$2,288,852
Supplemental Services
$32,816
$89,209
$2,136
$816
$84,511
$85,063
$31,722
$392,747
$2,447,297
$1,188,923
$14,490
$0
$357,322
$114,824
$8,309
$143,819
$390,924
$3,909,680
$123,766
$156,400
$1,163
$0
$34,176
$340,196
$364,618
$347,930
$2,383,752
Respite Care
Counseling
*IL ranks 1st of 53 in Counseling Units and 2nd of 53
in Counseling Clients
16
IL GRG Total Expenditures by Service, FY 2005-2009
$500,000
$450,000
$400,000
$350,000
$300,000
$250,000
$200,000
$150,000
$100,000
$50,000
$-
2005
2006
2007
2008
2009
Information Services
$97,388
$107,070
$113,261
$4,824
$10,232
Access Assistance
$18,031
$17,987
$30,112
$81,355
$54,360
Supplemental Services
$149,080
$128,432
$111,792
$102,461
$89,209
Respite Care
$38,961
$35,745
$17,657
$24,166
$14,490
Counseling
$158,652
$151,461
$177,406
$164,506
$156,400
17
FY 2009 GRG Units per Client by Service in States with 1,700,000+
Persons 60+ as estimated in 2009
100
90
80
70
60
50
40
30
20
10
0
MI
IL
OH
PA
TX
NY
FL
CA
50 States +
DC, PR &
GU
Counseling
9.1
4.4
2.1
0
4.3
4
3.4
3.7
3.9
Respite Care
94.6
201.5
0
8
44.5
4.5
117.4
165
52.1
Supplemental Services
2.2
3.3
70.9
1
2.4
9
9.8
33
21.4
Access Assistance
1
3.8
0
7.5
2.7
4
4
1
2.7
Information Services
0
0.3
0
0
0
0.3
0.2
0.8
0.2
*IL ranks 1st of 53 in Respite Units/Client
18
FY 2009 GRG Ratio of Children Served per GRG Client in States with
1,700,000+ Persons 60+ as estimated in 2009
2.5
2
1.5
1
0.5
0
MI
IL
OH
PA
TX
NY
FL
CA
Children per GRG Client
1.32
1.28
1.02
1
2.19
0.82
0.68
0.92
50 States + DC, PR & GU
0.8
0.8
0.8
0.8
0.8
0.8
0.8
0.8
19
FY 2009 – IL GRG Age, Gender, Race
& Rural
• Age:
•60% Age 55-74
•15% Age 75-84
• 5% Age 85+
• 20% Age Missing
•Gender:
•70% Female,
•20% Male and
•10% Gender
Missing
• Race:
•75% White, not Hispanic
•10% Black/African American
• 2% White, Hispanic
• 1% Two or More Races and
•12% Race Missing
•24% Rural
20
Looking Ahead:
National Family Caregiver Support Program
• Vice President’s Middle Class Task Force –
Caregiver Initiative
– Focuses on Specific Caregiver Needs
– Integrates Caregiver Supports with other HCBS
– FY 12 Budget Request
•
•
•
•
NFCSP (III E) - $192.2 million
Title VI C - $8.388 million
ADSSP - $11.46 million
Lifespan Respite - $10 million
21
Looking Ahead:
National Family Caregiver Support Program
• OAA Reauthorization
– http://www.aoa.gov/AoARoot/AoA_Programs/OAA/Reaut
horization/docs/OAAreauth_summaries_stakehldrs.pdf
“From that input, AoA developed the following key principles:
1. NATIONAL FAMILY CAREGIVER SUPPORT PROGRAM
Add "parent caregiver" to the National Family Caregiver
Support Program (subject to the 10% cap), consolidate
and clarify program definitions and priorities, and revise
and consolidate the authorization of appropriations. This
will provide much needed services to older individuals
providing care to their adult children (ages 19 to 59), and
responds to Congressional intent.”
22
Looking Ahead:
Supporting Family Caregivers
• Health Care Reform Provisions
– Incentives to states to increase access to
Medicaid HCBS
– Training for family and home care workers
– Expand access to care coordination and
transitional care services
• Evidence-based interventions
– REACH, STAR-C and others (many with initial
funding via ADSSP grants)
23
Looking Ahead:
Supporting Family Caregivers
• Title III-E Program Evaluation
– Evaluation design contract awarded to the
Lewin Group in FY 2008
• Building a logic model to assess outcomes on
program participants & a process evaluation
– Implementation phase will follow at SUA, AAA,
LSP and individual client levels
• Research Brief Number 5
– Issued September 2011 focuses on the NFCSP;
encouraged to review this data
for use in program management
24
Looking Ahead:
Supporting Family Caregivers
• ASPE / AoA Collaboration on Comparative
Effectiveness Research for Assistive
Technologies to support caregivers
– ASPE contracted with Lewin to look at the
research and study real life situations at the
AAA level, where Assistive Technologies are
being used and promoted as a way of
reducing caregiver burden and injury
25
Looking Ahead:
Supporting Family Caregivers
• Lifespan Respite Act
–
–
–
–
–
Authorized by Congress in 2006
Due to be Reauthorized in 2012
Funded in 2009, 2010 & 2011 at $2.5 Million
President’s FY 12 Request: $10 Million
Competitive Grant Process
• 29 States and DC funded between 2009 & 2011
• Up to $200,000 for three year projects
• TA Activities – ARCH National Respite Network &
Resource Center
• Expansion Grants – 7 states and DC in 2011
26
Looking Ahead:
Supporting Family Caregivers
Resource Centers
1. Technical Assistance Centers for Family Caregiver
Support Programs
• Grantee: Family Caregiver Alliance; Sub: ARCH
National Respite Network & Resource Center
• Contact: Family Caregiver Alliance 1-800-445-8106;
ARCH Respite 1-703-256-2084
• Website: http://www.caregiver.org or
http://www.archrespite.org
27
Looking Ahead:
Supporting Family Caregivers
Resource Centers
2. Alzheimer’s Technical Assistance Resource Center
• Grantee: Research Triangle Institute
• Contact: http://www.adrc-tae.org/tikiindex.php?page=LewinTALeads
• Website: http://www.adrc-tae.org/tikiindex.php?page=AboutADSSP
• Summary: This resource center supports grantees & others as
they implement evidence-based interventions and innovative
practices designed to empower and assist caregivers of
persons with Alzheimer's disease and related disorders.
28
Looking Ahead:
Supporting Family Caregivers
Resource Centers
3. National Resource Center on Lesbian, Gay, Bisexual and
Transgender (LGBT) Aging
• Grantee: Services & Advocacy for GLBT Elders (SAGE)
• Contact: info@lgbtagingcenter.org or 212-741-2247
• Website: http://www.lgbtagingcenter.org/
• Summary: This resource center is designed to educate mainstream
aging services organizations about the existence and special
needs of LGBT elders, sensitize LGBT organizations to the existence
and special needs of older adults, and educate LGBT individuals
about the importance of planning ahead for future long-term care
needs.
29
30
Contact Information
U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES ADMINISTRATION ON AGING, Regions V & VII
Amy Wiatr-Rodriguez, Aging Services Program
Specialist
amy.wiatr@aoa.hhs.gov
312.886.8536
www.aoa.gov
31
State of Illinois
NFSCP Recent
Accomplishments &
Future Direction
32
Illinois Accomplishments
# of Caregivers Served in FY 2010
• Counseling/Support Groups/
Caregiver Training
8,611
• Respite Care
2,110
• Supplement Services
603
• Access Assistance
49,898
• Information Services
9,176
33
Illinois Accomplishments
• State-Funded GRG Program: Serves more
than 4,000 GRG and their grandchildren
each fiscal year.
• Lifespan Respite Grant-received a three
year grant from AoA.
34
Future Directions
• Evaluate the need with AAAs and service
providers to incorporate a standard caregiver
assessment into the service components of the
NFCSP in Illinois.
• Incorporate the NFSCP into the ADRC service
delivery model.
• Continue the collaborative efforts of the
Lifespan Respite Program.
35
Future Directions
• Incorporate more consumer directed care
service models in Illinois’ NFCSP.
• Improve collaboration with the Alzheimer’s
Associations throughout Illinois.
• Continue to work with the AAAs and service
providers to reduce the amount of missing
data in submitted NAPIS reports for NFCSP.
36
Future Directions
• Incorporate the Parent Caregiver
component into the service components of
the NFCSP in Illinois. The Parent Caregivers
provide care to adult children aged 19 to 59.
37
Contact Information
Illinois Department on Aging
Betsy Creamer, Planning Supervisor
Betsy.Creamer@illinois.gov
217/524-7944
http://www.state.il.us/aging/
38
Ten Years of Caregiver Support:
An Area Agency on Aging
Perspective
Who are caregivers and what do they
need?
40
Program Development
• Community meetings
• Consultations with Red Cross and
disease-specific organizations
• Caregiver Advisory Council
• AoA and IDOA goals
• Local needs assessment
41
Our Network
• 11 Caregiver Resource Centers
• Caregiver Specialists
• Respite Registry
42
Powerful Tools for Caregivers
• AoA demonstration
• First AAA to use this program throughout
our service area
• All Caregiver Specialists trained
• “Common language”
43
How do we identify and reach
caregivers?
44
Outreach Initiatives
•
•
•
•
•
•
Business outreach
Physician outreach
LEP/ethnic outreach
Libraries
Schools
Faith-based organizations
45
Our Caregiver Program Today
• Caregiver Resource Centers have
developed local expertise
• Internal and external collaborations
• Tailored services to meet unique needs
46
Caring Together, Living Better
• Grassroots partnership
• Lower-income African-American
communities
• Funded by Weinberg Foundation
• Used lessons learned from the past ten
years
• Leveraged the strength of the faith
community
47
Future directions
Greater emphasis on:
• Volunteers
• Technology
• Evaluation
Continued emphasis
on:
• Partnerships/outreach
• Responsiveness/tailoring
48
Your comments/predictions?
Sarah Stein
Countywide Caregiver
Coordinator
(708)383-0258
Sarah.stein@ageoptions.org
49
Questions?