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  

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

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.

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

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

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

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

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

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?

Comparing IRIS & Family Care Participants Last “Functional Screen” for participants in 2009 (as of October 31st) IRIS: 1,002 participants Family Care (FC): 30,773 participants

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

Percentage of IRIS Participants by Budget Amounts

Participants by Difference Between Allocation and Budget

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

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.

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

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

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.

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

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

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

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

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

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

Questions? We now have some time for questions.