1. Understanding Self-Directed Care in Wisconsin: A Comparison of IRIS and Family Care Programs
Grant Cummings, Patric Hernandez, Jerrett Jones, Andrew Kell, and Jacob Schindler

2. Background IRIS-Include, Respect, I-Self-Direct
Long term care program administered by the Wisconsin Department of Health Services and initiated in July 2008
Long-term care services are provided to Wisconsin elders, and adults with physical and developmental disabilities
An alternative to Wisconsin’s managed care program Family Care, and allows clients at a nursing home level of care to select and manage the long-term care services they receive

3. Background IRIS-Include, Respect, I-Self-Direct
The federal Centers for Medicare and Medicaid services require that recipients be provided with multiple services options, including a managed care system and self-directed system
The Adult Long-Term Care Functional Screen-Version 3, is used to determine long –term eligibility determined the ability to perform the daily activities of living
The functional screen is administered to recipients annually and as individuals circumstances change.

4. Background
Medicaid is a jointly funded federal-state insurance program for low-income and needy people
State long-term care programs are for Medicaid-eligible individuals who meet the level of care standards for nursing home admission
Those who do not meet nursing home level of care may be provided Medicaid long-term care card services (medical-related care) and some level of interdisciplinary care management, but are not allowed waivers for individual care

5. Family Care
In January 1998, Family Care was authorized by the Governor and the Wisconsin state legislature to provide a cost-effective approach that would facilitate consumer independence and enhance quality of life
It serves people with physical and developmental disabilities, and frail elders with the following specific goals: giving people better choices about where they live and what kinds of services and supports they get to meet their needs; improving access to services; improving quality through a focus on health and social outcomes; and creating a cost-effective system
Family Care is available in fifty-three out of the seventy-two counties in Wisconsin

6. Family Care (Continued)
To facilitate Wisconsin’s long-term goals, Family Care has two major organizational components: Aging and Disability Resource Centers (ADRC) and Managed Care Organizations (MCO)
ADRCs are designed to be a first point of contact where older individuals and people with physical or developmental disabilities can locate information and advice about a broad range of services available to them
MCOs, through a comprehensive network of long-term care services and contracts with providers, deliver services tailored to an individual’s specific needs.
At each regional ADRC, individuals receive long-term care enrollment counseling, which offers consultation and advice about the options available to meet their specific long-term care needs
These services include non-medical care such as health management and assisted living
MCOs receive a monthly per-person payment to manage and purchase care for their members

7. Wisconsin Self-Directed Care: IRIS
In 2008, the Wisconsin Department of Health Services in conjunction with PricewaterhouseCoopers modified the Family Care budget methodology for a new program, IRIS
In IRIS, individuals self-manage their publicly funded long-term care supports, goods, and services
The new program allows individuals to choose and allocate services they use
IRIS emphasizes the self-direction given to individual budget allocations that are commensurate with participant abilities and support needs

8. Wisconsin Self-Directed Care: IRIS
IRIS is organized through the use of regional Aging and Disability Resource Centers (ADRC) and two statewide contract organizations: the Independent Counseling Agency (ICA) and the Financial Services Agency (FSA)
The ADRC provides enrollment and benefits counseling that are consistent with Family Care
The Independent Counseling Agency (ICA) provides counseling for IRIS participants
The Financial Services Agency (FSA) tracks all spending and provides payroll and payout services for participants
The ARDC….
For IRIS, the ADRCs provide the screening process to determine individual budgets
The Independent Counseling Agency….
At the individual level, the ICA provides consultation to assist participants in determining the types of non-medical services they need within the confines of their budget allocation

9. Policy Questions
Because Wisconsin IRIS program is unique among Self-Directed Care programs in providing services to individuals with physical or developmental disabilities and the elderly there is an urgent need to understand:
How do IRIS participants differ from Wisconsin Family Care participants?
Do these differences including demographics, service expenditures, and budget amounts warrant any changes to Self-Directed Care in Wisconsin?

10. Comparing IRIS & Family Care Participants
Last “Functional Screen” for participants in (as of October 31st)
IRIS: 1,002 participants
Family Care (FC): 30,773 participants

11. IRIS & Family Care Age Groups
Average IRIS Participant:
49.6 years old
Average FC Participant:
62.6 years old

12. IRIS & Family Care Gender
FC may have a slightly higher proportion of female participants because of a large senior population

13. IRIS & Family Care Race
Both programs are similar to each other and Wisconsin general population
Both programs have slightly higher proportions of Black self-identified population proportions than Wisconsin, but slightly lower Caucasian and Hispanic population proportions

14. IRIS & Family Care Employment Status
The majority of IRIS participants are not employed, yet not old enough to be retired
Difference between IRIS and Family Care may again be due to an older Family Care participant base

15. IRIS & Family Care Target Groups
IRIS has a higher proportion of participants with developmental disabilities
Family Care has a higher proportion of frail elders

16. IRIS & Family Care Participant Conditions
1/3 of Family Care and 1/4 of IRIS participants are diagnosed with depression
~30% of participants from both programs are diagnosed with mental retardation

17. IRIS and Family Care Depression Rates by Target Group
Family Care participants are diagnosed with depression at higher rates than IRIS for each target group
The physical disabilities target group has the highest proportion of participants diagnosed with depression

18. IRIS and Family Care Participants with Special Equipment
Slight differences between IRIS and Family Care may be due to an older Family Care population and target group proportions

19. IRIS and Family Care Participant Characteristics
Evaluation of participant needs allows DHS to allocate funding
Over half of participants in both programs need overnight care and help with bathing
IRIS has higher proportions of participants for 2/3 of these needs categories

20. IRIS and Family Care Living Situation Comparison
The majority of participants in either program are living in one of the following 3 living situations:
alone
with a spouse/partner
with family

21. IRIS and Family Care Living Situations with Spouse, Partner, or Family
2/3 of IRIS participants are living with spouse/partner/family
~1/3 of Family Care participants are living with spouse/partner/family

22. IRIS Participants in Assisted Living Situations*
IRIS: 96% of participants living in non-assisted living situation
Family Care: 76% of participants living in non-assisted living situation
*Some participant living situations were recorded before enrollment in program

23. IRIS & Family Care Participants Living in Preferred Situation
A higher proportion of IRIS participants are living in their self-identified preferred living situation than Family Care

24. Spending Patterns in IRIS vs. Family Care
Because the scope of services differs between Family Care and IRIS, we compare total Medicaid spending per person
The median expenditures by target group reveal higher spending in DD group, lower in FE and PD groups in IRIS, compared to Family Care
The overall median monthly expenditure is $156 higher in IRIS than in the Family Care program

25. IRIS vs. Family Care Monthly Expenditures
Percentage of IRIS Participants
Percentage of Family Care Participants
Family Care Median Monthly Expenditure
Difference Between IRIS and Family Care Expenditures
IRIS Median Monthly Expenditure
Target Group
Developmental
45%
36%
$3,467
$3,030
$437
Disability
Physical
33%
29%
$1,959
$2,097
-$138
Frail Elderly
22%
35%
$2,067
$2,195
-$128
Total
100%
$2,503
$2,347
$156
Note: Includes Medicaid Fee-for-Service expenditures in addition to within-program expenditures. Figures are not adjusted to account for participant acuity characteristics that differ between programs.

26. Service Use in the IRIS Program
For each target group, supportive home care supervision was the most common service
Nonmedical transportation was also a common service across target groups
Supported employment and daily living skills were commonly used only by participants in the developmental disability target group

27. Service Use in IRIS by Developmental Disability Target Group
Service Category
Number of IRIS Participants
Median Monthly Expenditure
Shc*-Supervision Services – Hours
188
$1,400.00
Other Allowable CMO* Services
181
$340.17
Respite Care – Other
137
$520.00
Specialized Transportation And Escort – Nonmedical
134
$161.04
Day Center Services Treatment 71
$785.28
Counseling And Therapeutic Resources – Alternative 50
$265.00
Prevocational Services 40
$684.43
Shc-Supervision Services – Days 32
$2,634.00
Supported Employment 28
$682.50
Daily Living Skills Training 27
$757.39

28. Service Use in IRIS by Physical Disability Target Group
Service Category
Number of IRIS Participants
Median Monthly Expenditure
Shc - Supervision Services – Hours
144
$797.58
Other Allowable CMO Services 83
$120.00
Specialized Transportation And Escort – Nonmedical 53
$78.75
Shc - Chore Services – Hours 35
$270.00
Personal Emergency Response Systems 24
$31.00
Adaptive Aids – Other 23
$1,002.20
Communication Aids 17
$108.00
Shc - Supervision Services – Days
$550.00
Shc -Routine Home Care Services
$237.90
Counseling And Therapeutic Resources – Alternative 14
$218.60

29. Service Use in IRIS by Frail Elderly Target Group
Service Category
Number of IRIS Participants
Median Monthly Expenditure
Shc - Supervision Services – Hours 94
$762.00
Shc -Routine Home Care Services 32
$234.00
Other Allowable CMO Services 28
$149.46
Specialized Transportation And Escort – Nonmedical 26
$102.36
Shc - Chore Services – Hours 16
$742.00
Personal Emergency Response Systems 11
$32.00
Shc - Supervision Services – Days 10
$366.18
Respite Care – Other 9
$350.00
Communication Aids 4
$99.69
Home Modifications
$2,260.00

30. IRIS Budgets IRIS participants have budgets based on their acuity
The allocation is a prediction of spending and acts as a guideline for budget setting at the ICA
Budgets, on average, are lower than allocations
There is some flexibility for special purchases, but in general under-spending does not lead to a balance being carried forward

31. IRIS Budgets and Allocations
Average Monthly Allocation*
$3,314
Median
$1,906
Range
$0 to $13,062
Standard Deviation
$3,169
Total Monthly Allocations
$2,183,746
Average Monthly ICA Budget
$2,780
$1,643
$11 to $12,718
$2,679
Total Monthly ICA Budgets
$1,832,035
Average Difference Between Allocation and Budget
$534
$47
-$6,284 to $9,613
$1,337
Total Difference Between Allocations and Budgets
$351,711

32. Percentage of IRIS Participants by Budget Amounts

33. Participants by Difference Between Allocation and Budget

34. Participants by Difference Between Allocation and Budget Expressed as Percent of Budget

35. IRIS Program-Specific Characteristics
Number
Percentage
Average of
Monthly
Standard
Target Group
Participants
Expenditure*
Deviation
Min
Max
Developmental
346
45%
$3,025
$2,515
$38
$14,211
Disability
Physical
252
33%
$1,007
$992
$42
$10,126
Frail Elderly
164
22%
$737
$595
$27
$5,131
Total
762
100%
$1,865
*Spending does not include Medicaid Fee-for-Service expenditures. There may be lags in spending data that influenced this analysis.

36. Predicting Spending
DHS uses statistical models to set the budget allocations for IRIS and Family Care participants
For the first couple years of IRIS’ existence, DHS has used Family Care data to create IRIS’ statistical model
Why?
IRIS was a brand new program and did not have any data
IRIS participants were entering and exiting the program
To assure cost neutrality between Family Care and IRIS
Participants receive the same budget allocation regardless of which program they enroll in
Spending during this adjustment period would not reflect the spending of participants when the program is stabilized

37. Predicting Spending (Cont.)
By 2009, IRIS participants and staff were accustomed to the program, so is it still appropriate to use Family Care data to create the spending model?
To answer this question, we created our own statistical model and applied it to both the IRIS and Family Care data
Like DHS, we used participants’ responses from the functional screen to predict actual program spending

38. Predicting Spending Results
We found that the important predictors of spending were different in the two programs.
Example: Needing help preparing meals is an important predictor of spending in Family Care, but not in IRIS, while not having any means for effective communication is important in IRIS, but not in Family Care.
This suggests that different spending models need to be created: one from IRIS data and one from Family Care data.

39. Predicting IRIS Participation
We also wondered if we could predict which long- term care participants will enroll in IRIS
This information could help DHS predict future budget needs, especially as IRIS expands to new counties
To explore this issue, we created another statistical model from responses to the functional screen
We found that some screen responses predicted a lower likelihood of enrolling in IRIS while others predicted a higher likelihood of enrolling

40. Predicting IRIS Participation Results
General patterns in our results
People needing relatively simple assistance in activities of daily living were more likely to enroll in IRIS
Each year of age predicts a lower likelihood of enrolling in IRIS
Individuals that have difficulty communicating or making decisions are less likely to enroll in IRIS
We also tested whether this model could be used to forecast future enrollment in IRIS
We found it did not accurately predict the enrollment of current IRIS participants
This suggests that DHS should not rely on functional screen responses to predict future enrollment in IRIS

41. Recommendations Policy Recommendation 1:
Future statistical models used to predict the spending of IRIS participants should be created from IRIS Cost data
IRIS has stabilized as a program
IRIS participants and their spending patterns are significantly different than those of Family Care participants
The challenge for DHS is to find a different method for achieving cost neutrality between IRIS and Family Care

42. Recommendations (Cont.)
Policy Recommendation 2:
Wisconsin DHS should track IRIS participation by target group and required services to follow any emerging trends in enrollment
We have highlighted some patterns in IRIS enrollment, but these will continue to change as the program matures
The functional screen is insufficient for this purpose
DHS should continue efforts to administer surveys, site visits, and interviews with IRIS participants and ADRC staff to gain more insight into why participants enroll in IRIS

43. Recommendations (Cont.)
Policy Recommendation 3:
Wisconsin DHS should do what it can to streamline the IRIS data systems
IRIS information is spread over multiple data systems
This makes it difficult to evaluate program data on a frequent and systematic basis
DHS should attempt to consolidate these systems
DHS should also establish a data protocol so that data generation and analysis can be replicated quickly and frequently

44. Recommendations (Cont.)
Policy Recommendation 4:
Wisconsin DHS should initiate efforts to systematically track the outcomes of the IRIS program
Participant self-assessment surveys and program assessments should be added to the functional screen
DHS should request regular reports from the ADRCs, ICA, and FSA regarding participant complaints and customer service calls
Tracking program outcomes will ensure that IRIS continues to meet the needs of participants
IRIS participants take the functional screen annually, which is a perfect opportunity to track participant and program outcomes

45. Questions?
We now have some time for questions.