1. “Research and Implementation: Lessons from the Original Demonstration” February 11, 2004 Teleconference

2. Agenda  Overview of Cash & Counseling Program  Presentation of Evaluation Results University of Maryland Baltimore County Qualitative Study Mathematica Results Question and Answer session  Review of Implementation Lessons Question and answer session

3. Cash & Counseling: Program Overview  Funders  The Robert Wood Johnson Foundation  US DHHS/ASPE  Administration on Aging  Waiver and Program Oversight  Centers for Medicare and Medicaid Services  National Program Office  Boston College Graduate School of Social Work

4. Original Cash & Counseling Demonstration Overview Demonstration States  Arkansas, Florida, New Jersey  Study Populations  Adults with disabilities (Ages 18-64)  Elders (Ages 65+)  Florida only: Children with developmental disabilities  Feeder Programs  Arkansas and New Jersey: Medicaid personal care option programs  Florida: Medicaid 1915c Home and Community-Based long-term care waiver programs

5. Essential Elements of Cash & Counseling  Person-centered planning for personal assistance services  Consumer-directed individualized budgets  Client supports including financial management and counseling services (supports brokerage)  Quality assurance and improvement systems

6. Basic Model for Cash & Counseling  Step 1: Consumers receive traditional assessment and care plan  Step 2: A dollar value is assigned to that care plan  Step 3: Consumers 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: Cash allowance group provided with financial management and counseling services (supports brokerage)  Step 5: Consumer and counselor develop cash plan to meet consumer’s personal assistance needs

8. Basic Model for Cash & Counseling  Consumers may appoint someone to help them manage the cash allowance  Almost all of the participants chose to utilize the financial management services  Consumers in cash allowance group may return to traditional services at anytime

9. Cash & Counseling Teleconferences 2004  January 23 rd : Responding to the Cash & Counseling Call for Proposals: Requirements and Resources  February 11 th : Research & Implementation: Lessons from the Original Demonstration.  March 8 th : Open Forum: Getting your Questions Answered.

10. Responding to the Cash & Counseling Call for Proposals Intent to Apply Deadline: February 13, 2004, 3pm EST available at www.cashandcounseling.orgwww.cashandcounseling.org Full Proposal Deadline: March 31, 2004 submit to simonek@bc.edusimonek@bc.edu

11. Research and Implementation: Lessons from the Original Cash & Counseling Demonstration Cash & Counseling Qualitative Study

12. Purpose of Qualitative Study  Provide detailed information and stories about the experience of Cash & Counseling consumers in each state  Four questions were addressed:  Has the program made a difference in participants’ lives?  How does participation in the program compare to previous arrangements?  How are services provided?  How does the program work?

13. Methodology  Focused on care units: Consumer/family member(s), primary paid worker, and counselor  Samples included consumers of different ages, races, sexes, monthly cash benefits amounts, and types of workers (i.e. family vs. non-family)  Interviewers conducted hour long, face-to-face, tape- recorded interviews in the consumer’s home

14. Emerging Themes  Stories were created from transcripts and incorporated the perspective of all care unit members  Many themes were identified including:  Choice is important to consumers  Consumers valued the flexibility of the program  Consumers found creative ways to use their monthly allowance to meet their needs  Consumers experienced improved quality of life and satisfaction with their care

15. In Their Own Words: Consumers *Mrs. Margaret Taylor, 64 years old, describing her non-family personal care worker “She’s a beautiful person. She’s helpful and she’s just like an older daughter and she cooks and cleans and does the laundry and puts things away…She just takes care. I don’t have to worry about her and whatever I ask her and whatever I need, I ask her to do, and she does it and things I don’t even ask her to do, she does.” * Names are changed to protect consumer confidentiality

16. In Their Own Words: Consumers *Mr. Gilberto Santiago, 26 years old, describing how his life has changed since his father became his primary paid caregiver “You can trust him [father] more. You know that you will be taken care of better…As a young person, you like to look good…your dad knows about that, he knows how your jeans fit…He [father] puts your hat on the way you want…[health aides] don’t take care of you the same way your father does.” *Names have been changed to protect consumer confidentiality

17. For More Information  Arkansas report is final and available on the web site; New Jersey report is in process of final revisions; Florida final report will be available in Fall 2004  Completed reports available at www.cashandcounseling.org www.cashandcounseling.org

18. Effects on Consumers’ Service Use and Well-Being: Findings from Arkansas Leslie Foster Stacy Dale Randall Brown Barbara Phillips Jennifer Schore Barbara Lepidus Carlson Research and Implementation: Lessons from the Cash & Counseling Demonstration Teleconference; February 11, 2004

19. Intended Effects of IndependentChoices  Medicaid beneficiaries with disabilities direct their own personal care services  Change amounts, timing, and types of services  Satisfaction and well-being improve - Without detriment to health and safety

20. Methods  Randomly assigned applicants after baseline  Interviewed treatment and control group members 9 months later  Compared regression-adjusted outcomes for the two groups

21. Arkansas Survey Sample

22. Received Paid Assistance in Past Two Weeks ***Significantly different from control group at.01 level. Ages 18-64 Age 65+ *** TC TC

23. Hours of Assistance in Past Two Weeks **, ***Significantly different from control group at.05 (**) or.01 (***) level. Ages 18-64 Age 65+ *** TC TC ** 100** 100** 120 125 128 PaidUnpaid

24. Satisfaction Visiting paid caregiver always came as scheduled (%) Very satisfied with paid help with household activities (%) ***Significantly different from control group at.01 level. Ages 18-64 Age 65+ *** TC TC TC TC Paid caregivers always completed tasks (%) TC TC

25. Unmet Needs Unmet need for personal care (%) Unmet need for household help (%) Unmet need for transportation (%) ***Significantly different from control group at.01 level. Ages 18-64 Age 65+ *** TC TC TC TC TC TC Unmet need for routine health care (%) *** TC TC

26. Adverse Events and Health Problems Fell (%) Saw doctor for a cut, burn, or scald (%) *, **Significantly different from control group at.10 (*) or.05 (**) level. Ages 18-64 Age 65+ * TC TC TC TC ** Bed sores developed or worsened (%) TCTC

27. Satisfaction with Overall Care and Life Very satisfied with overall care arrangements (%) **, ***Significantly different from control group at.05 (**) or.01 (***) level. Ages 18-64 Age 65+ *** TC Very satisfied with way spending life (%) TC TCTC

28. The Experiences of Informal Caregivers and Hired Workers Under IndependentChoices Stacy Dale Leslie Foster Randy Brown Barbara Phillips Barbara Carlson Research and Implementation: Lessons from the Cash & Counseling Demonstration Teleconference February 11, 2004

29. Why Study Caregivers and Workers ? Informal caregivers  Provide more in-home personal care than paid sources  Help Medicaid beneficiaries avoid nursing homes Hired Workers  Must have positive experiences for consumer-direction to be sustainable

30. Samples  Informal caregiver: the person providing the most unpaid care at baseline. Sample: 721 caregivers for the treatment group 712 caregivers for the control group  Hired worker: the primary person providing paid care at the time of the 9-month survey. Sample: 391 workers for treatment group 281 agency workers

31. Outcome Measures Compared survey responses (10 months post-baseline) of treatment group caregivers to control group caregivers for these measures:  Amount of assistance  Satisfaction with care arrangements  Emotional, financial, physical well-being  Satisfaction with life

32. Informal Caregiver Characteristics  86% Female  93% Related to consumer  62% Lived with consumer  56% of treatment group caregivers became paid worker

33. Caregivers Provide Fewer Hours, but Are More Satisfied **Significantly different from control group at.05 level. Hours of Care Provided During Past 2 Weeks Very Satisfied with Care Arrangements (%) ***Significantly different from control group at.01 level. ** *** TreatmentControl TreatmentControl

34. Caregiver Well-Being Report caregiving causes great financial strain (%) Report caregiving causes great emotional strain (%) Report caregiving causes great physical strain (%) Report caregiving causes great physical strain (%) ***Significantly different from control group at.01 level. *** TreatmentControl TreatmentControl TreatmentControl

35. Caregiver Health and Life Satisfaction **Significantly different from control group at.05 level. Current Health is Fair or Poor Relative to Peers Very Satisfied with Life (%) ***Significantly different from control group at.01 level. ** *** TreatmentControl TreatmentControl

36. Policy Concerns for Hired Workers Without agency support Will workers be under-compensated or mistreated? Will workers receive adequate training? Will workers feel emotionally and physically strained? What pattern of care will workers provide?

37. Findings for Hired Workers Hired workers  Were mostly relatives (78%) and friends (16%)  Received pay similar to that of agency workers: $6 per hour for about 12 hours a week  Provided an average of 26 hours of unpaid care per week  Helped with wide range of tasks

38. Most Concerns about Workers Didn’t Materialize  Many lacked formal training, but: Most felt well-prepared No greater physical problems for workers or consumers  Had low compensation and fringes, but: Most were very satisfied with pay and conditions  Felt more emotional strain and wanted more respect but: Difference confined to hired relatives

39. Program Costs in Arkansas and Policy Implications Randall Brown Stacy Dale Leslie Foster Barbara Phillips Jennifer Schore Research and Implementation: Lessons from the Cash & Counseling Demonstration Teleconference February 11, 2004

40. Expected Effects on Costs  Program required to be “budget neutral” per month of service  Waiver service costs could increase  Other Medicaid/Medicare costs may be affected  Medicaid cost pressures limit states’ options

41. Methods and Data  Compare actual to expected costs for personal care services  Compare treatment and control groups on service use and costs  Data:Individual care plans Medicaid claims Medicare claims  Two-year follow-up data for 1312 first-year enrollees

42. Effects on PCS Receipt and Costs PCS Expenditures per receipt per month (dollars) ***Significantly different from control group at.01 level. *** TC $ $ Percent received any PCS or Allowance (Year 1) *** Among all sample members Among “new” PCS eligibles

43. Actual/Expected PCS in Month 12 (Mean actual cost) / (mean expected cost) **, ***Significantly different from control group at.05 (**) or.01 (***) level. *** TC TC Note: Includes only those receiving an allowance for the treatment group, and only those receiving PC services for the control group. (Hours received or cashed out) / (care plan hours)

44. Effects on Medicaid Costs per Person Source: Medicaid claims data. Sample size 1,312 first-year enrollees. **, ***Significantly different from zero at.05 (**) or.01 (***) level.

45. Sources of Reduction in Medicaid Costs Source: Medicaid claims data. Sample size 1,312 first-year enrollees. **, ***Significantly different from zero at.05 (**) or.01 (***) level.

46. Policy Implications  Program worked from consumer viewpoint -Interested elders can direct their services -Caregivers benefit too  Costs and access are interrelated  Lower long-term care costs offset higher PCS costs  Agencies might be motivated to compete  Early Florida results suggest generalizability

47. LESSONS from the IMPLEMENTATION of CASH and COUNSELING ARKANSAS, FLORIDA, and NEW JERSEY

48. Outreach and Enrollment  Role of traditional agencies  Their cooperation is needed  Assigning them responsibility for outreach and enrollment can create problems  Building caseload quickly may require hiring dedicated staff

49. Outreach and Enrollment  Direct outreach  To eligible beneficiaries and perhaps to their families  Letters from the governor  Targeting eliminates inquiries from ineligibles  Community education  Useful for outreach if can be targeted  Can help to generate support among community providers

50. Outreach and Enrollment  Home visits to interested beneficiaries  Necessary to explain the allowance program  Involving family and friends reduces the number of visits needed  Avoid presence of aides from traditional agencies  Materials  Must be easy to understand  Need a variety of media—written, oral, and video  In languages of eligible populations

51. Outreach and Enrollment  Formal screening process for appropriateness?  May not be legally defensible  Inconsistent with the philosophy of consumer direction  Allow ing all interested to enroll  Proved workable  But can be costly due to early dropout

52. Representatives  Representatives assist the consumer with the allowance  Naming representatives  Most representatives are related to the consumer Required for children; many adult consumers will name them  Shared decision making typical  Almost all representatives served the consumer well  Special monitoring when the representative is also a worker

53. Counseling and the Spending Plan  Counselor concerns about liability for consumer outcomes  Initial spending plan  Development can be time-consuming  Consumer need for help not indicative of inappropriateness  Advance preparation can minimize counselor home visits to develop the plan  Plans must be revised as consumer needs and plans change  Techniques available to reduce need for revision

54. Use of the Allowance and Workers  Hiring workers Nearly all consumers use their allowance to hire workers  Most workers are relatives or acquaintances of the consumer Access to care can be improved by tapping this “labor supply”  Consumers without a relative or acquaintance to hire often have difficulty hiring a worker Methods to assist them include training and worker registries

55. Use of the Allowance and Workers  Terminating workers Consumers usually handle worker termination gently Some will need the assistance of counselors  Consumers take advantage of the flexibility of the allowance Purchase the service that is needed rather than the covered service

56. Fiscal Services  Nearly all consumers want payroll and check writing services Provided these are offered at little direct expense to them  Procedures needed for minimizing overpayment and recouping if necessary Payments may be deposited for which consumers have become ineligible Consumers may overspend the allowance due to administrative error

57. Fiscal Services  Fiscal agents typically strapped when case loads are small May need assistance with cash flow until reach “break-even” caseload Break-even caseload may vary from 200 to 1,000 consumers, depending on the structure of payment  Need clear delineation of counselor and fiscal agent duties

58. Fiscal Services  Consumer financial statements Consumers need financial statement to monitor their accounts Statements should be timely and easy to understand Should clearly list the amount and payee

59. Preventing Exploitation of Consumer  Consumer exploitation was extremely rare  A few questionable cases identified by counselor at initial home visit Referred to protective services or back to traditional program  Periodic visits and telephone calls prevent exploitation as consumers’ situations change Information and impressions from calls can signal need for discretionary visit Telephone calls most useful when both consumer and representative are contacted

60. Preventing Abuse of the Allowance  Abuse of the allowance almost non-existent  Critical to preventing abuse of the allowance are: 1.Review of initial and revised spending plans to ensure only permissible goods and services are included 2.Review time sheets and check requests before payment to ensure consistency with the spending plan  Given these 2 reviews, reviews of receipts not critical for prevention of abuse of funds held by fiscal agent

61. Structure and Procedures  Having traditional agencies provide counseling can create problems  Traditional systems that offer a choice of counselors can be responsive to consumer demand  Support among traditional staff can improve if they observe the value of an allowance program  Full-time counselors most efficient  Workable to have sufficient caseload to occupy a substantial portion of counselor’s time

62. Structure and Procedures  Giving counselors authority to approve goods and services on a pre-approved list: Reduces expense of review of spending plans State audit to ensure counselors follow approval procedures  Counseling tasks have many fiscal elements An efficient approach is to combine counseling and fiscal services in the same organization and Make counselors responsible for some fiscal tasks

63. Steps from Enrollment to Receipt of Allowance (1-5) 1.Consumer reviews rules and considers whether to name representative and what to include in spending plan 2.Counselor visits the consumer to re-explain program and answer questions 3.Consumer and counselor prepare and sign a formal spending plan 4.Worker employment papers are completed and sent to fiscal agent for review 5.Counselor submits plan to program office for approval

64. Steps from Enrollment to Receipt of Allowance (6-10) 6.Consumer, counselor, fiscal agent, and perhaps program office resolve any errors in plan 7.Fiscal agent initiates consumer account from approved plan 8.Any errors in the employment papers are resolved by counselor, worker and fiscal agent 9.Traditional agency is notified of the date on which to terminate service 10.State Medicaid system is notified to initiate allowance

65. Reducing Time to the Allowance  Some program structures and procedures are more effective than others in reducing time to allowance  Procedures can be streamlined  Programs should monitor elapsed time to allowance Intervene if long lags observed

66. Program Costs  Avoid assigning responsibility for assessment and care planning to an advocate for the consumer  Cashing out care plans at a discount may be necessary to constrain costs  Overall costs could increase if the availability of an allowance increases demand  Costs and access are interrelated. Lower long-term care costs offset higher PCS costs.

67. Contact Information & Deadlines  All inquiries about the program, selection criteria or application process should be directed to Kristin Simone, Deputy Program Director, either via email at simonek@bc.edu or by calling 617.552.0620 simonek@bc.edu  Intent-to-Apply form due: February 13, 2004, 3p.m. EST  Full Proposal due: March 31, 2004  Intent-to-Apply form and application guidelines can be found on www.cashandcounseling.orgwww.cashandcounseling.org