Cash & Counseling: An Option of Participant Direction Alzheimer’s Disease Supportive Services Program Annual Meeting, Arlington, VA June 3, 2009 Kevin J. Mahoney, PhD, Director Sandra Barrett, Consultant

2 National Resource Center for Participant-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.

3 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.

4 Original and Expansion Cash & Counseling States

5 Nursing Home Diversion and Veteran’s Directed Home and Community Based Services States

6 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

7 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 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 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 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 ** * *

Contractures Developed or Worsened 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 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. Percent Adults Children TT T T C C C C ARFL NJ FL ***

14 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

15 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”).

16 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 Results Ohio Area Agency on Aging Illinois Cash & Counseling Program

18 Characteristics of Traditional and Participant-Directed Participants Ohio AAA Participant- Directed N= 168 Ohio AAA Traditional N= 407 Average age Percent female Living alone % with a representative 41N/A % with Alzheimer’s % with dementia Illinois C&C Participant-Directed N= 183 Illinois CCD Traditional N=400 Sample N/A MMSE Normal MMSE Mild MMSE Moderate MMSE Severe

19 Characteristics Continued Ohio AAA Participant- Directed N= 165 Ohio AAA Traditional N= 407 Percent with 4 or more ADL impairments Average # of ADL impairments Percent with 4 or more IADL impairments Average # of IADL impairments Percent with ADL Impairment Illinois C&C Participant- Directed N=183 Illinois C&C Participant- Directed N=400 Eating Continence Dressing Grooming Transfer Bathing ADL Mean

20 Ohio AAA - Satisfaction with Choice and Control over Services for Traditional ESP and Participant-Directed ESP Client Percent saying they are definitely satisfied with the ability to… PD Baseline N= 165 PD 6 Months N= 84 Traditional N= 157 Choose the person who takes care of me Choose the types of services needed Choose the day and time of services

21 Illinois C&C Participant Satisfaction Workers Spends majority of time working92.5 Respect from worker96.9 Worker listens93.9 Case managers Case manager helpful85.1 Can you talk to your CM when you need to88.7 Case manager respectful97.0 Fiscal intermediary Can talk to FI when need to82.3 Get info from FI that you need58.5 FI staff treat with respect91.1 (N = 69) Question Item C&C Percent Yes Responses

22 Illinois C&C Service Description and Use of Budget Average allocated budget (month)$1,049 Type of worker (%) Family51.4 Friends31.8 Other3.3 Missing12.6 Service use (%) Home Care100.0 Emergency response31.3 Goods20.3 Examples: microwave, glasses, lift chair, washer

23 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

24 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.

25 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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