June 3, 2009 Kevin J. Mahoney, PhD, Director Sandra Barrett, Consultant
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Cash & Counseling: An Option of Participant DirectionAlzheimer’s Disease Supportive Services ProgramAnnual Meeting, Arlington, VA June 3, 2009
Kevin J. Mahoney, PhD, Director
Sandra Barrett, Consultant
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National Resource Center forParticipant-Directed Services Offerings Individual Consulting: Our team of subject matter experts
are available to help you design programs, evaluate existing programs, and recommend improvements in all aspects of operationalizing participant direction, including the areas of policy development, quality management, financial management services, participant involvement, data management and information systems, and more.
Membership Programs: Individuals and organizations will have the opportunity to gain membership status to receive access to a wide range of critical information resources, and the latest developments pertaining to self-direction. Members can interact with peers, troubleshoot problems, and improve operations.
Training: We currently offer training modules for support services, additional training modules are in development.
Research: Our research focuses on promising practices and the impact of participant-directed programs.
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NRCPDS Offerings (Continued) Public Policy: To ensure the growth of participant
direction opportunities across the country, public policy that directly or indirectly impacts the expansion of participant direction must be informed by existing research, knowledge, and practice. We have created comprehensive strategies to ensure public policy is informed by lessons learned and a well-established stakeholder involvement process.
National Participant Network: Recognizing the important voice those who receive participant-directed supports play in the design of our models, NRCPDS has developed the National Participant Network (NPN). The NPN plays a critical role in developing participant involvement strategies in participant-directed models at the local level while also providing essential input into NRCPDS’ design of tools and products. This ensures that all of our work is ultimately by the needs of those for which participant-directed supports are intended.
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Original and Expansion Cash & Counseling States
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Nursing Home Diversion and Veteran’s Directed Home and Community Based
Services States
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Basic Model for Cash & Counseling Step 1: Participants receive traditional
assessment and care plan
Step 2: A dollar value is assigned to that care plan
Step 3: Participants receive enough information to make unbiased personal choice between managing individualized budget or receiving traditional agency-delivered services
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Basic Model for Cash & Counseling Step 4: Participant and counselor
develop spending plan to meet participant’s personal assistance needs
Step 5: Cash allowance group provided with financial management and counseling services (supports brokerage)
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Receiving Paid Assistance at 9 Months
95
76
92 94 94 94
80
68 64
79 79
65
91
82
0
20
40
60
80
100
Non-Elderly Adults
*, ** Significantly different from control group at .05, .01 level, respectively.
Percent
T C AR
Elderly Adults Children
T C FL
T C NJ
T C AR
T C FL
T C NJ
T C FL
**** ** **
****
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Very Satisfied with Overall Care Arrangements
68
505657
68
52
71
27
54
42
35 37
4748
0
10
20
30
40
50
60
70
80 Non-Elderly Adults
*, ** Significantly different from control group at .05, .01 level, respectively.
Percent
T C AR
Elderly Adults Children
T C FL
T C NJ
T C AR
T C FL
T C NJ
T C FL
**
**** **
****
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Had an Unmet Need for Help with Personal Care
41
34
55
37
47
58
4543
3633
4446
2726
0
10
20
30
40
50
60Non-Elderly Adults
*, ** Significantly different from control group at .05, .01 level, respectively.
Percent
T C AR
Elderly Adults Children
T C FL
T C NJ
T C AR
T C FL
T C NJ
T C FL
**
**
**
*
*
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Contractures Developed or Worsened
26
14
2022
27
13
9
2018
16
9
2528
25
0
10
20
30
40 Non-Elderly Adults
*, ** Significantly different from control group at .05, .01 level, respectively.
Percent
T C AR
Elderly Adults Children
T C FL
T C NJ
T C AR
T C FL
T C NJ
T C FL
**
**
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Very Satisfied with Way Spending Life These Days
43
64
38
56
36
4752
29
23
50
21
37
2825
0
20
40
60
80 Non-Elderly Adults
*, ** Significantly different from control group at .05, .01 level, respectively.
Percent
T C AR
Elderly Adults Children
T C FL
T C NJ
T C AR
T C FL
T C NJ
T C FL
****
**
****
**
*
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Informal Caregivers Very Satisfied with Overall Care
*,**,*** Significantly different from control group at .10 (*), .05 (**), or .01 (***) level.
4852
4243
30 32
22
0
20
40
60
PercentAdults Children
T T T TC C C C
AR FL NJ FL
***
******
***
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Effect on Total Medicaid Costs In Arkansas, no significant difference by
end of year 2 Reductions in NF and other waiver costs off-
set increase in personal care costs
In New Jersey and Florida, costs up 8-12%, but states learned how to control costs
Higher costs in Arkansas and New Jersey due to failure of traditional system
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Update
Arkansas satisfied CMS measure of “budget neutrality” throughout the 9 years that Independent Choices operated under “1115” waivers, saving $5.6 million.
The take-up rate in AR grew from 4.6% of those eligible to 11% (largely through “word-of-mouth”).
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Policy Implications
Can increase access to care Greatly improves quality of life (all
ages) Caregivers also benefit greatly States may be concerned about costs
But have learned how to control them
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Other Participant-Directed Program
Evaluation ResultsOhio Area Agency on Aging
Illinois Cash & Counseling Program
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Characteristics of Traditional and Participant-Directed Participants
Ohio AAA Participa
nt-DirectedN= 168
Ohio AAA Traditiona
lN= 407
Average age 81.96 80.68
Percent female
83.9 79.4
Living alone 47.6 67.6
% with a representative
41 N/A
% with Alzheimer’s
7.5 2.3
% with dementia
18.6 8.3
Illinois C&CParticipant-
Directed
N= 183
Illinois CCDTraditional
N=400Sample
75.6 78.4
67.7 78.5
50.8 70.0
34.1 N/AMMSE Normal 33.3 50.0MMSE Mild 19.1 23.0MMSE Moderate
31.7 20.5
MMSE Severe 15.9 6.5
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Characteristics ContinuedOhio AAAParticipant-Directed
N= 165
Ohio AAATraditiona
l N= 407
Percent with 4 or more ADL impairments
20.4 5.1
Average # of ADL impairments
1.78 1.24
Percent with 4 or more IADL impairments
85.5 74.5
Average # of IADL impairments
5.05 4.23
Percent with ADL
Impairment
Illinois C&C
Participant-Directed
N=183
Illinois C&C
Participant-Directed
N=400
Eating 35.5 26.0
Continence 48.6 34.0
Dressing 69.4 48.5
Grooming 70.0 51.0
Transfer 75.4 58.2
Bathing 91.3 78.0
ADL Mean 3.90 2.95
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Ohio AAA - Satisfaction with Choice and Control over Services for Traditional ESP and Participant-Directed ESP ClientPercent saying they are definitely satisfied with the ability to…
PD BaselineN= 165
PD 6 Months
N= 84
Traditional N= 157
Choose the person who takes care of me
52.6 90.0 70.1
Choose the types of services needed
62.4 90.0 74.2
Choose the day and time of services
51.6 79.7 71
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Illinois C&C Participant Satisfaction
WorkersSpends majority of time working 92.5Respect from worker 96.9
Worker listens 93.9Case managers
Case manager helpful 85.1Can you talk to your CM when you need to 88.7Case manager respectful 97.0
Fiscal intermediaryCan talk to FI when need to 82.3Get info from FI that you need 58.5FI staff treat with respect 91.1
(N = 69)
Question Item C&C Percent Yes Responses
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Illinois C&C Service Description and Use of Budget
Average allocated budget (month) $1,049
Type of worker (%)Family 51.4Friends 31.8Other 3.3Missing 12.6
Service use (%)Home Care 100.0Emergency response31.3Goods 20.3
Examples: microwave, glasses, lift chair, washer
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Lessons Learned Older, more frail and cognitively
impaired participants can succeed in participant-directed services
Program serves families Case managers play a key role Program planning and design can
preempt some of the challenges Political processes, leading for change
within the agency are crucial
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Ms. Ruthie Crutchfield
Mother cannot always tell us what she needs or wants. She begins telling us something, but forgets and says
“too bad” or “regardless.” We
know what she means.
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Mr. Efrain Gonzales
“Dad doesn’t speak much English and is frustrated and more confused
when he does not understand. He is happier and more comfortable with family taking care
of him.”
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For more information, please visit us at
www.participantdirection.org