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The National Evaluation of HCBS Waiver Programs:Selected Findings from the Consumer Surveys of HCBS and ICF/MR Recipients with ID/DD
Human Services Research Institute
The University of Minnesota Research and Training Center on Community Living
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What Is NCI?
Nationally recognized set of performance and outcome indicators for developmental disabilities service systems
Reliable data collection methods & tools Baseline and trend data at the state &
national level Benchmarks of performance
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NCI History Co-sponsored by NASDDDS and HSRI Launched in 1997 Formed steering committee (including
seven field test states) Compiled ~60 candidate performance
indicators Developed and tested data collection
instruments 23 states currently participating
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Context of the Study
Increasing number of people receiving HCBS services and supports
Decline in numbers of individuals receiving services in ICFs/MR
Increasing emphasis on self-determination and self-direction
Focus on choice Concerns about differential outcomes by
setting and associated with individual characteristics
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Study Background
Research funded by the Centers for Medicare and Medicaid Services (CMS) through a contract between CMS and the Lewin Group, and subcontracts between the Lewin Group and the University of Minnesota, MEDSTAT/Thomas, and the Human Services Research Institute (HSRI)
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Study Background This study examined the outcomes of efforts in
six selected states It is part of a larger evaluation of Medicaid Home
and Community-Based Services whose purpose is to study of the impact of Medicaid Home and Community-Based Services programs on quality of life, quality of support, service utilization and cost
Questions1) How Medicaid HCBS program funds are currently used?2) How programs and policies affect costs, access to needed support and quality of services?3) How program design features may be associated with cost-effective use of program options?
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Study Background
Study is based on ~3,000 Medicaid HCBS and ICF/MR recipients in Alabama, Kentucky, Indiana, Oklahoma, Massachusetts and Wyoming
Uses the NCI consumer survey Linked with Medicaid cost data Total consumer interviews in six states: 3,255
(all service recipients) Total HCBS and ICF/MR interviews: 2,948
(90.6%)
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Individual Outcomes Assessment
The National Core Indicators (NCI) program was developed through a partnership of the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI)
NCI data gathered with a common instrumentation package Meets accepted standards as being both valid and
reliable.
Standard training program for interviewers
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Selected Characteristics of Adults (18 and Older) with ID/DD Receiving Medicaid HCBS and ICF/MR Services in Six States
HCBS ICF/MRGender
Male 56.9% Male 57.3%
Female 43.1% Female 42.7%
Age1
Average Age 42.25 Average Age 45.38
1 Sig. t=-5.227 p<.001
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States with samples drawn randomly from institutional and community services
Regional variation Both urban and rural states Demographic variety Variation in mix of institutional and community
services
Criteria for Selecting States for Participation
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“Representativeness” of Six State Sample
Group HCBS ICF/MR
Number % Number %
U.S.A. (June 2004)* 424,855 80.2% 104,526 19.8%
Six States (June 2004) 33,875 80.1% 8,391 19.9%
Sample (2003-2004) 2,365 80.2% 583 19.8%
*U.S.A. and 6 state totals include children and adults; sample included only adults (18 years and older)
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Four Major Analyses
1. “Access to Community Settings, Resources, and Opportunities for Persons with Intellectual and Developmental Disabilities with Different Degrees and Types of Disability”, Sarah Taub, M.M.H.S.; Giuseppina Chiri, M.A.; Roger J. Stancliffe, Ph.D.; K. Charlie Lakin, Ph.D.; Robert Doljanic, Ph.D.
2. “Self-Determination Among Medicaid Home and Community-Based Services (HCBS) and ICF/MR Recipients in Six States” , K. Charlie Lakin, Ph.D.; Sarah Taub, M.M.H.S.; Robert Doljanic, Ph.D.; Giuseppina Chiri, M.A.; Soo-Yong Byun, M.A.
3. “Satisfaction and Sense of Well-Being Among Medicaid ICF/MR and HCBS Recipients in Six States”, Roger J. Stancliffe, Ph.D.; K. Charlie Lakin, Ph.D.; Sarah Taub, M.M.H.S.; Giuseppina Chiri, M.A.; Soo-Yong Byun, M.A.
4. “Factors Associated with Expenditures for Medicaid Home and Community Based Services and ICF/MR Services for Persons with Intellectual and Developmental Disabilities in Four States”, K. Charlie Lakin, Ph.D.; Robert Doljanic, Ph.D.;
Soo-Yong Byun, M.A.; Roger J. Stancliffe, Ph.D.; Sarah Taub, M.M.H.S.; Giuseppina Chiri, M.A.
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Study #1
“Access to Community Settings, Resources, and Opportunities for Persons with Intellectual and Developmental Disabilities with Different Degrees and Types of Disability”
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Focus of Study #1
Access to community settings Resources and opportunities for persons
with intellectual and developmental disabilities with different degrees and types of disabilities
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Profile of HCBS and ICF/MR Recipients HBCS
Mild level of ID (43%) No seizure disorder (73%) Verbal (81%) Ambulatory (89%)
ICF/MR Mild level of ID (27%) No seizure disorder (66%) Verbal (67%) Ambulatory (80%)
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Selected Characteristics of Adults (18 and Older) with ID/DD Receiving Medicaid HCBS and ICF/MR Services in Six States
HCBS ICF/MRLevel of ID2
Mild 40.6% Mild 25.6%
Moderate 25.7% Moderate 14.9%
Severe 15.0% Severe 18.9%
Profound 14.2% Profound 38.0%
None 2.0% None 0.7%
(Not Reported) 2.5% (Not Reported) 1.9%
2 Sig. χ2=199.916 p<.001
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Selected Characteristics of Adults (18 and Older) with ID/DD Receiving Medicaid HCBS and ICF/MR Services in Six States
HCBS ICF/MR
Psychiatric Diagnosis
% No 69.4 % No 66.7
% Yes 30.6 % Yes 33.3
Autism
% No 93.8 % No 93.8
% Yes 6.2 % Yes 6.2
Cerebral Palsy3
% No 86.0 % No 81.9
% Yes 14.0 % Yes 18.1
Seizure or Neurological Disorder4
% No 33.0 % No 41.9
% Yes 10.0 % Yes 9.0
3 Sig. χ2=6.056 p<.054 Sig. χ2=15.78 p<..001
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Residential Settings of People with Different Levels and Types of Disability
People with more severe disability and with additional disabilities live in larger settings
Type of disability has a differential impact on where a person will reside
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Policy Implications Waiver supports need to be expanded to
accommodate people regardless of the level and nature of their disabilities
We need to redouble our efforts to help people in large ICF/MR facilities to move to community settings
In order to prevent this phenomenon in the future, we need to ensure that people don’t go into such facilities in the first place
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Study #2
“Self-Determination Among Medicaid Home and Community-Based Services (HCBS) and ICF/MR Recipients in Six States”
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Focus of Study #2
Self-determination in the lives of persons with intellectual and developmental disabilities (ID/DD) receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services
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Choice in Daily Life
HCBS recipients 16% chose home on their own 19% chose home staff 54% autonomously determines use of spending money 64% decide on their own use of spare time 53% control daily schedule
ICF/MR recipient 9% chose home on their own 6.5% chose home staff 39% autonomously determines use of spending money 43% decide on their own use of spare time 26% control daily schedule
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15.6% 9.2%0
34.6% 29.7%
0
19.3%6.5%
41.4%
27.8%
0
48.8%42.6%
0
47.3%
51.2%
43.0%
63.0%
0
16.6%27.6%
0
33.4%42.4%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
HCBS ICF/MR HCBS ICF/MR HCBS ICF/MR
Per
cen
tag
es
Choice of Current No. of Places Visited Choice of In-Home Home Before Choice Support Staff
2+ 1 None Full Assigned, can change NoneFull Partial None
Chart 16. Reported Opportunities for Choice in Housing Among HCBS and ICF/MR Recipients in Six States
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Additional Findings Individual characteristics, HCBS vs. ICF/MR
program participation and size of residential setting consistently associated with self-determination
More severe levels of ID or co-occurring conditions associated with less choice and control
Verbal ability also strongly linked with choice-making abilities
Effects more noticeable for ICF/MR service recipients
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Policy Implications
Choice should be present in the lives of individuals regardless of where they live
For those who live in large structured settings, we need to alter our expectations insofar as standards and monitoring in order to ensure that such individuals experience choice
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Study #3
“Satisfaction and Sense of Well-Being Among Medicaid ICF/MR and HCBS Recipients in Six States”
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Focus of Study #3
Satisfaction and sense of well-being in the lives of persons with intellectual and developmental disabilities (ID/DD) receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services
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Well-being and satisfaction
No difference by type of financing program on: Loneliness Being afraid at home or in the neighborhood Feeling happy Satisfaction with work/day program
Minor differences by type of financing program on: Satisfaction with home and work support staff Satisfaction with home
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Chart 17. Feelings of Loneliness Among HCBS and ICF/MR Service Recipients in Six States
55.1%31.3%
13.6%
Never/rarely
Sometimes
Often
13.1%
39.0%47.9%
HCBS ICF/MR
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79.2%
13.1%
7.7%
Never
Sometimes
Often
7.8%
15.1%
77.1%
HCBS ICF/MR
Feels Afraid:
In the Neighborhood
79.2%
15.3%
5.5%
Never
Sometimes
Often
5.7%
16.1%
78.2%
HCBS ICF/MR
Feels Afraid:
At Home
Chart 18. Reported Feelings of Fear of HCBS and ICF/MR Recipients in their Home and Neighborhoods
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Chart 22. Reported Friendships of HCBS and ICF/MR Recipients in Six States
6.9%
72.6%
20.5%Friends other than staffand family
Friends are staff orfamily
No friends
18.7%
70.3%
11.0%
HCBS ICF/MR
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Other Findings
Consistently lower satisfaction or well-being for those with a co-occurring psychiatric diagnosis
More negative findings were always associated with larger residence size
More positive results for those living with family
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Policy Implications
Family support continues to be a critical resource
People with intellectual and psychiatric disabilities present heightened challenges to our ability to support their inclusion in social and other networks
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Study #4
“Factors Associated with Expenditures for Medicaid Home and Community Based Services and ICF/MR Services for Persons with Intellectual and Developmental Disabilities in Four States”
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Focus of Study #4
Medicaid expenditures for persons with intellectual and developmental disabilities (ID/DD)
Examined variations in expenditures for individuals of different characteristics and service needs
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Chart 27. Est. Federal and State SS Act Expenditures for Adult HCBS and ICF/MR Recipients in Four States
$6,480
$73,014$35,159
$55,261
$26,611
$0
$20,000
$40,000
$60,000
$80,000
$100,000
$120,000
$140,000
HCBS ICF/MR
Federal SSA Cash Federal Medicaid State Medicaid
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$123,420
$57,641
$80,626
$70,028
$50,554
$134,918
$114,189$114,217
$0
$20,000
$40,000
$60,000
$80,000
$100,000
$120,000
$140,000
$160,000
Mild or No ID Moderate ID Severe ID Profound ID
HCBS
ICF/MR
Chart 29. Average Annual Medicaid Expenditures for Adult HCBS and ICF/MR Recipients by Level of ID in Four States
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Findings
Medicaid expenditures higher for ICF/MR recipients even controlling for level of disability
Most costly setting for HCBS services is in the individuals own home; less costly supports include family care/host homes
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Policy Implications
State systems for people with intellectual and developmental disabilities are already over extended and confront waiting lists. It will be important going forward to allocate resources to those services that support positive outcomes and that provide deliver value for the $$ spent.
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Summary Need consistent support for HCBS
development and CMS initiatives Self-determination outcomes Expenditures Magnitudes less than overwhelming
Much to do in Medicaid LTSS generally and HCBS specifically Lots of congregate care and facility-based
services Choice remains limited for persons with severe
disability Routine health and rights standards not always
attained
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Individual characteristics more related to outcomes than service models People with more severe disability have
less desirable outcomes People with dual diagnoses have less
desirable outcomes The more severe the disability the less
influence of service models
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NCI Program as a Vehicle for Research Multi-state sample provided opportunity to
examine national goals Sample size allowed breakdowns by factors
and multivariate analyses Choice, independence, inclusion, relationships,
productive activity… Policy-relevant variables (program size, type,
models) Individual characteristics for description and
controls Ability to merge characteristics, outcomes and
expenditures Flexibility to respond to questions as they arise
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Limitations of the NCI and Multi-State Approach Samples of states as “representing” the US A few items in the NCI would benefit from more
precision Community integration Consumer direction
Benefits of integrated site- and agency-level independent variables
Staffing (e.g., ratios, turnover) Financial (when payment files are not
available)
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Questions?
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Contact Information
Sarah Taub
Giuseppina Chiri
Charlie Lakin