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Self Employment in Home Care


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      Grant Cummings, Patric Hernandez, Jerrett Jones,
      Andrew Kell, and Jacob Schindler
   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
   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
   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
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
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

   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
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
Comparing IRIS & Family Care
• 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

       6%                   85+     • Average IRIS Participant:
90%              17%        years
                                    49.6 years old
70%                         years   • Average FC Participant:
60%    22%                          62.6 years old
40%              20%
30%                         25-49
20%              22%
10%    19%                  18-24
                  7%        years
       IRIS   Family Care
       IRIS & Family Care Gender

         53%                           • FC may have a slightly
70%                61%
                                       higher proportion of female
                                       participants because of a
                                       large senior population
40%                           Male
20%                39%
         IRIS   Family Care
                  IRIS & Family Care Race

              IRIS     Family Care         Wisconsin*
                                                              • Both programs are similar
     Caucasian                                                to each other and Wisconsin
                                                              general population
                                                              • Both programs have
       Hispanic                                               slightly higher proportions of
                                                              Black self-identified
         Asian                                                population proportions than
                                                              Wisconsin, but slightly lower
American Indian                                               Caucasian and Hispanic
                                                              population proportions
                  0%    20%          40%       60%      80%
IRIS & Family Care Employment Status

100%                                       • The majority of IRIS
90%    14%
                                           participants are not employed,
80%              40%                       yet not old enough to be
70%                                        retired
60%                         Retired
50%                         Not employed   • Difference between IRIS and
40%              38%        Part-time      Family Care may again be due
30%                         Full-time      to an older Family Care
20%                                        participant base
       16%       16%
 0%    3%         5%
       IRIS   Family Care
 IRIS & Family Care Target Groups

90%                                         • IRIS has a higher proportion of
80%    44%
                 37%                        participants with developmental
70%                                         disabilities
                                            • Family Care has a higher
                                            proportion of frail elders
40%    36%
30%                         Frail Elderly

10%    20%
       IRIS   Family Care
          IRIS & Family Care Participant Conditions

 Mental Retardation                                         • 1/3 of Family Care and 1/4 of
            Diabetes                                        IRIS participants are
     Other Dementia
                                                            diagnosed with depression
       Cerebral Palsy                                       • ~30% of participants from
       Schizophrenia                                        both programs are diagnosed
   Bi-Polar Disorder
              Autism                                        with mental retardation
   Multiple Sclerosis
      Terminal Illness
 Muscular Dystrophy
         Spinal Bifida
Ventilator Dependent
                          0%   5% 10% 15% 20% 25% 30% 35% 40%

                               IRIS   Family Care
          IRIS and Family Care Depression Rates
                     by Target Group

      Physical Disabilities                                        • Family Care participants are
                                                                   diagnosed with depression at
                                                                   higher rates than IRIS for each
              Frail Elderly
                                                                   target group
Developmental Disabilities                                         • The physical disabilities
                                                                   target group has the highest
                     Total                                         proportion of participants
                                                                   diagnosed with depression
                              0%    10%    20%   30%   40%   50%

                         IRIS      Family Care
              IRIS and Family Care Participants
                   with Special Equipment

                                                            • Slight differences between IRIS
       Walker or Cane                                       and Family Care may be due to
                                                            an older Family Care population
Wheel Chair or Scooter                                      and target group proportions

       Mechanical Lift


                         0%     10%   20%     30%   40%   50%

                         IRIS   Family Care
     IRIS and Family Care Participant Characteristics
           Overnight Care
      Needs Help Bathing
   Needs Help With Meds
            Mental Health                                         • Evaluation of participant
 Short-Term Memory Loss
                                                                  needs allows DHS to allocate
    Unable To Remember
     Needs Help Dressing
     Needs Help Toileting
Needs Help With Decisions
                                                                  • Over half of participants in
Needs Some Help Toileting                                         both programs need
       Offensive Behavior                                         overnight care and help with
                 Exercise                                         bathing
  Long-Term Memory Loss                                           • IRIS has higher proportions
      Physically Resistive                                        of participants for 2/3 of
 Current Substance Abuse                                          these needs categories
              Brain Injury
                             0% 10% 20% 30% 40% 50% 60% 70% 80%

                             IRIS   Family Care
 IRIS and Family Care Living Situation Comparison

                                                                                               • The majority of participants
                   With Spouse/Partner
 Community-Based Residential Facility …                                                        in either program are living in
                                Family                                                         one of the following 3 living
                        Nursing Home◊                                                          situations:
          Licensed Adult Family Home                                                                 • alone
                          Hospice Care
                                                                                                     • with a spouse/partner
                 Paid Caregivers Home
Residential Care / Aptartment Complex
                                                                                                     • with family
       With Non-relatives/Roommates
    Home/Apartment (Support Service …
 Independent Apartment - Community-…
                 With One Non-Relative
          With Live-In Paid Caregivers
                                                         ◊ Indicates living situation is not
                  Other (Includes Jail)◊                 allowed once enrolled in IRIS
   Other Situations (<1% of pop. each)

                                       0% 5% 10%15%20%25%30%35%40%45%

                                IRIS       Family Care
       IRIS and Family Care Living Situations
           with Spouse, Partner, or Family

 90%                                              • 2/3 of IRIS participants are
 80%         34%
                                                  living with spouse/partner/family
                                                  • ~1/3 of Family Care
 40%                                              participants are living with
 30%         66%                                  spouse/partner/family
             IRIS                   Family Care

         With Spouse, Partner, or Family
         Without Spouse, Partner, or Family
      IRIS Participants in Assisted Living Situations*

                                                                    Assisted -
 IRIS: 96% of participants living in non-
 assisted living situation                                                          Non-
                                                                                 Situation -

             Assisted -
                                 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

100%                                                              • A higher proportion of
 90%           14%
                                                       24%        IRIS participants are living
                                                                  in their self-identified
 60%                                                              preferred living situation
 50%                                                              than Family Care
 40%           86%
                IRIS                                Family Care

        Respondents Living In Preferred Situation
        Respondents Living In Situation Other Than Preferred
Spending Patterns in IRIS vs. Family
   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

                                                                          Family Care     Between IRIS
                       Percentage of Percentage of IRIS Median              Median         and Family
                            IRIS      Family Care    Monthly                Monthly           Care
Target Group            Participants  Participants Expenditure            Expenditure     Expenditures
Developmental               45%              36%            $3,467           $3,030             $437
Physical                    33%              29%            $1,959           $2,097            -$138
Frail Elderly               22%              35%            $2,067           $2,195            -$128
Total                      100%              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
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
                                              Number of
                                                 IRIS       Median Monthly
                  Service Category           Participants    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
                                                      Number of IRIS Median Monthly
                         Service Category              Participants   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                               17         $550.00

 Shc -Routine Home Care Services                                 17         $237.90

 Counseling And Therapeutic Resources – Alternative              14         $218.60
Service Use in IRIS by Frail Elderly
Target Group
                                                      Number of IRIS   Median Monthly
                   Service Category                    Participants     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                                                4            $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
   Median                                                       $1,643
   Range                                                $11 to $12,718
   Standard Deviation                                           $2,679
   Total Monthly ICA Budgets                               $1,832,035
   Average Difference Between Allocation and Budget               $534
   Median                                                           $47
   Range                                              -$6,284 to $9,613
   Standard Deviation                                            $1,337
   Total Difference Between Allocations and Budgets           $351,711
                             Percentage of IRIS Participants by
                             Budget Amounts

Percentage of Participants







                                            Monthly Budget Amount
Participants by Difference Between
Allocation and Budget

  Percentage of Participants







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


Percent of Participants





                                Difference Between Allocation and Budget Expressed as a Percent of Budget
IRIS Program-Specific Characteristics

                   Number       Percentage       Average
                      of             of          Monthly      Standard
Target Group     Participants   Participants   Expenditure*   Deviation    Min    Max

Developmental        346          45%             $3,025       $2,515     $38    $14,211


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
   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
   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
     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
   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
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
   We now have some time for questions.

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