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)

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

**** ** **

****

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

**

**** **

****

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

**

**

**

*

*

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

**

**

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

****

**

****

**

*

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

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