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Prepared by:
John Agosta, Ph.D. & Jon Fortune, Ed.D.Human Services Research Institute
7690 SW Mohawk StreetTualatin, OR 97062
http://www.hsri.org/[email protected], [email protected]
http://www.sageresources.org/Resources.aspx
Responding to theNeeds of People
with Intellectual and Other Disabilities
Wanted: An Improved Service Response
Topics
What sorts of changes are you looking to change?
Taking stock of things using a Gap Analysis
Thinking through action steps
Focus on resource allocation
2Human Services Research Institute
What sorts of changes are you looking for?
Human Services Research Institute 3
Taking Stock of Things
Human Services Research Institute 4
Conduct a Gap Analysis to see how things stand
A Gap Analysis is an assessment that compares the actual performance to potential or desired performance.
We use a series of “benchmarks” to review state performance
Seven Benchmarks
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1. Reasonable Promptness
2. Most Integrated Setting
3. Person-Centered Planning and Services
4. Achieving Valued Outcomes
5. Assuring Access to Services
6. Confidence in Quality and Effective Oversight
7. System Economy and Efficiency
Illinois
Three Benchmarks
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1. People with developmental disabilities have access to and receive necessary publicly-funded services and supports with reasonable promptness.
2. Services and supports are provided in the most integrated setting appropriate to the needs of the individual.
3. The system must promote economy and efficiency in the delivery of services and supports.
Access to Services(Reasonable Promptness)
Quality Service Delivery
(Most Integrated Setting)
Efficiency and Economy
Preferred Outcomes
Florida& Texas
Methods
• Dialog involving a Strategic Path Work Group composed of participants representing self advocates, parents, advocacy groups, service providers, service coordinators and policy makers.
• Literature Review
• Data Analysis– Institute on Community Integration, University of
Minnesota– Coleman Institute, University of Colorado– Florida Agency for Persons with Disabilities
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Florida
The Bottom Line … Florida performs at average or near average levels on
several national indicators – Number served per 100,000 citizens– Percent receiving residential services living in homes of 1-6
people– Percent receiving residential services who live in institutions
Key issues that stand out1.Wait list for services2.Scarce fiscal resources, budget cuts and tier assignments3.Mix of services relies heavily on families4.Absence of needed community infrastructure5.Over use of large 16 bed plus facilities
8Human Services Research Institute
Florida
Fewer People ServedAverage or near average performanceFlorida provides Medicaid services to 190 people with developmental disabilities per 100,000 citizens. The national average is 198.
148
201
244
171
334
116
226
138
154
148
157
87
107
118190
198
50 100 150 200 250 300 350
New Jersey
Ohio
Pennsylvania
Illinois
New York
Texas
California
Tennessee
South Carolina
North Carolina
Mississippi
Kentucky
Georgia
Alabama
Florida
United States
Source: Prouty & Lakin (Eds.), Residential services for persons with developmental disabilities: Status and trends through 2008. Minneapolis: University of MN, Institute on Community Integration
People Receiving Medicaid Services Per 100,000
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Florida
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Projected Unmet Demand from 2007 to 2014(Chart 2)
0
2,000
4,000
6,000
8,000
10,000
12,000
14,000
16,000
2007 2008 2009 2010 2011 2012 2013 2014
No Change 2% Growth
IllinoisWaitlists and Unmet Demand
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Reliance on Large Congregate Settings
Prouty, et al., (2006) & IL DHS (2006)
2006 Utilization of all Residential Settings
Illinois National
Residences 1 < 6 7,780 37% 71%
Residences 7 < 15 6,612 32% 14%
Residences of 16+ 6,452 31% 15%
Total 20,844 100% 100%
63% 29%
(There are about another 1,100 served in SNF/PEDS facilities)
Illinois
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0
20
40
60
80
100
120
None/Mild/Moderate Severe/Profound All Levels
R. Prouty, G. Smith, C. Lakin. (2007). Residential Services for Persons with Developmental Disabilities:
Status and Trends Through 2006
Admissions into State Schools/Centers by Age and Level
of Need in TexasChart 8
0-14
15-21
0-21
• In 2006, 43 percent (114 out of 263) new of admissions into Texas state schools/centers were children.
• This is twice the national average of 21.7 percent.
• Many of these children have no to moderate levels of need.
Placements of Children
GapAnalysis Texas
Mix of Services
June 2009Human Services Research Institute 13
16.2% of people receiving services in Texas live with family (4,505 of 27,767 people at home and residential settings). The national average is 55.8%.
Source: Prouty & Lakin (Eds.), Residential services for persons with developmental disabilities: Status and trends through 2008. Minneapolis: University of MN, Institute on Community Integration
Texas
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84.0% 81.5%
74.0% 72.6% 71.6% 69.4% 68.6% 65.9% 65.9% 65.3% 63.9% 63.7%
$25
$75
$125
$175
$225
$275
$325
10.0%
30.0%
50.0%
70.0%
90.0%Ar
izon
a
Alas
ka
Idah
o
Sout
h C
arol
ina
Flor
ida
New
Jer
sey
Cal
iforn
ia
Was
hing
ton
Haw
aii
Del
awar
e
Nev
ada
Mas
sach
uset
ts
Medicaid expenditures per state citizen
Perc
enta
ge re
ciev
ing
in-h
ome
supp
orts
Source: Prouty & Lakin (Eds.), Residential services for persons with developmental disabilities: Status and trends through 2007. Minneapolis: University of MN, Institute on Community Integration
Percentage of Individuals Receiving In-Home Family Supports and Spending per Person
% in fam homes of all svc recips
Medicaid Expenditures per State Citizen
Florida
Key Issue: Reliance on 16+ bed facilities
15Human Services Research Institute
In 2007, in Florida 293 people resided in nursing facilities. The number is steadily trending up.
212 212 DNF 196 191
249282 274 293
050
100150200250300350
1991 1994 1996 1998 2000 2002 2004 2006 2007
Num
ber o
f Peo
ple
Per 1
00K
Source: Prouty & Lakin (Eds.), Residential services for persons with developmental disabilities: Status and trends through 2007. Minneapolis: University of MN, Institute on Community Integration
Trends of Individuals with Developmental Disabilities Residing in Nursing Homes
Florida
Spending ComparisonFiscal Effort
• This method appraises a state’s level of financial effort by measuring its overall spending for developmental disabilities services relative to state personal income.
• In 2006 ranked Florida ranked 47th
among the states with respect to its overall level of fiscal effort.
• In 2006-2007, the US Census Bureau ranked Florida 24th in Personal Income per Capita.
• In 2008, Florida is ranked 47th among states in state tax burden to its citizens.
Braddock, D. et al. (2008). The State of the States in Developmental Disabilities: 2008. Boulder, Colorado: Department of Psychiatry
and Coleman Institute for Cognitive Disabilities.
Florida 47California 37Georgia 50Illinois 40New Jersey 31New York 2North Carolina 25Ohio 9Pennsylvania 14Texas 49
Key Issue: Scarce Resources
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Florida
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DHS, 2006
Inefficient SpendingIllinois
Working Toward a Sustainable Future …
An action agenda anchored in values and committed to making the changes necessary to secure the best outcomes possible for people with developmental disabilities and families.
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Thinking Through Action Steps
Major Redesign Ideals
Raise the bar and expectations among individuals and their families
Strengthen community system Invest in home-based and self-directed services Strengthen system infrastructure Improve other community services Grow community system to cover demand
Press ahead to reduce further reliance on large, congregate care facilities
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Action Steps
Sustainable Futures Require: That they be value driven
People and families are at the center of our work;
Our purpose is to support people to pursue their own dreams and aspirations;
Inclusion is not only a moral imperative but a vehicle for mobilizing natural, unpaid supports
Supporting people to make contributions amplifies resources.
Commitment to quality. No retreat to custodial care or mediocre services.
Assure that the health and well-being of individuals are not traded off
Principles of person-centered supports must guide and energize all our endeavors.
Commitment to community integration and self-direction.
System efficiency, including equitable (fair) resource distribution.
Ample resources
Ample supportive infrastructure
System-wide collaboration.
Partnership within communities.
20Human Services Research Institute
Action Steps
Human Services Research Institute 21
One Way To IncreaseSystem Efficiency
Lower-cost high-valuepractices
Higher-cost low-value practices
People with Disabilities
Reduce reliance on high cost / low value practices to drive down “per person“ service costs. €
€€€
Six System Redesign Principles
Integration and Self-
Direction
Values &
Quality
Collaboration
Partnership within
Communities
System Efficiency
Ample
Resources
Ample
Infrastructure
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Florida
The Bottom Line …Texas is at a cross road. Texas has invested significant amounts for services over the years, but the present spending patterns and resulting service system do not leave the state in a good position going forward
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Texas Must Do Better
Insufficient Spending
Inefficient Spending
Increasing Demand
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Growing Unmet
Demand
Struggling Service System
Action AreasAction Area 1: Take steps in the short term to do no more to undercut the present
system, but instead begin to shore up the system.
Action Area 2: Promote self-direction among people with developmental disabilities by helping individuals with disabilities to engage in personal decision making and play collective leadership roles in setting service system policies.
Action Area 3: Promote partnerships among service recipients, family members and community service organizations as well as relevant state and local public agencies.
Action Area 4: Strengthen infrastructure available to support the delivery of an effective, high-quality community services system.
Action Area 5: Expand system capacity so that by 2020 all people who have emergency or critical unmet needs will be served with reasonable promptness.
Action Area 6: Expand support for people to live in the most integrated setting by reducing further the role that large congregate care facilities play in Florida’s developmental disabilities service system.
25Human Services Research Institute
Florida
Action Area 1: Support people in the most integrated setting
Action Step #1: Texas should reduce the number of people served at its state schools/centers to no more than the present nationwide utilization rate for these types of facilities.
Action Step #2: Cease admissions of children to state schools/centers.
Action Step #3: Further develop its “Money Follows the Person” initiatives to accommodate a stronger transition of people living in ICFs/MR who prefer to receive services in the most integrated setting.
Action Step #4: Texas should adopt policies to encourage organizations that operate ICFs/MR to transition to supporting individuals in the most integrated setting.
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Texas
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0
1,000
2,000
3,000
4,000
5,000
6,000
2006
2008
2010
2012
2014
2016
2018
Reducing State School/Center PopulationChart 19
• Reduce the state school/center population to the predicted nationwide norm by 2018.
• Population in 2018 would be 1,465 people.
• Requires reduction in population of 3,444 people .
Action Step Highlights Texas
Action Step #8: To close the gap between system capacity and service demand, system capacity must grow at a faster pace than service demand until the gap is closed.
Action Step #9: Illinois should concentrate on expanding home-based services as the primary tool for addressing service demand.
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Action Area 3: Expand Community Capacity
Illinois
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Year193 2009 2,878 $145 $97 $203per 2010 5,756 $290 $194 $405
100k 2011 8,634 $435 $291 $6082012 11,512 $579 $388 $8102013 14,390 $724 $485 $1,0132014 17,268 $869 $582 $1,2162015 20,146 $1,014 $679 $1,4182016 23,024 $1,159 $776 $1,6212017 25,902 $1,304 $873 $1,8242018 28,780 $1,449 $969 $2,026
250 2009 4,604 $232 $155 $324per 2010 9,208 $463 $310 $648
100k 2011 13,812 $695 $465 $9722012 18,416 $927 $620 $1,2972013 23,020 $1,159 $775 $1,6212014 27,624 $1,390 $931 $1,9452015 32,228 $1,622 $1,086 $2,2692016 36,832 $1,854 $1,241 $2,5932017 41,436 $2,086 $1,396 $2,9172018 46,040 $2,317 $1,551 $3,241
Resources Needed To Meet Service Demand ($ million)Two Service Utilization Levels by Three Cost Scenarios
Table 6
Source of Cost Data: Prouty et al., 2007; based on 2006 data.
Additional Capacity Needed
Current Avg. Cost Per Person
($50,336/person)
HCBS Services Only
($33,685/person)
ICF-MR Services Only
($70,404/person)
NOTE: 60.56% of these costs can be under-written by federal reimbursements through Medicaid (2008 rate)
Texas
30
Defining Individual Budget Allocations
…the term individual budgetamount means “a prospectively-determined amount of funds that the state makes available for the provision of waiver services to a participant.”
Centers for Medicare and Medicaid Services
Human Services Research Institute
Focus on Resource Allocation
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$
Little
Support NeededLittle A Lot
We want to move from a low correlation like THIS…
…to a high correlation
like THIS
$
Little
Support NeededLittle A Lot
A Lot
A lot
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In a “prospective budgeting” the state determines the budget amount for each individual, and that information is provided to the participant and planning team prior to service plan development.
In “retrospective” budgeting, the individual and planning team plans first, and a budget is decided upon afterwards.
Most states and CMS have moved to the prospective method.
Human Services Research Institute
Retrospective versus prospective budgeting…
Efficiency & Equity
Efficiency gains come from understanding exactly what it costs to provide a service at a given level of quality for a particular type of person. Most state developmental disability agencies, however, know little about per person actual costs.
Equity requires understanding what supports individuals need, and a fair allocation of resources to address personal needs.
Few systems have assessment processes that translate directly into resource allocations. Over time decisions made about expenditures often appear idiosyncratic and unfair.
33Human Services Research Institute
“It’s impossible to
individualize service until you’ve individualized the funding.”
Russ Pittsley
34Human Services Research Institute
Working To Get Personal Allocations Right
Do we really know what it costs to serve a person?
Why are some people allocated more that others, even though they have similar needs?
Is the way we allocate funds fair? Is it based on support needs?
Is this efficient?
Several states are working to assess needs systematically and allocate accordingly
35
Person-Centered Budget Allocations
Adjusted Service Reimbursement
RatesHuman Services Research Institute
Set Levels & IBAs
Implement Prepare Collect Data
Overview of the Strategic Planning ProcessDeveloping Individual Budgets In Relation to Service Payment Rates
Compile the Collected
Information
Collect Information on
Individuals
Assign Individuals to
Assessment Levels
Set Individual Budget
Allocations in Relation to
Rates
Review Findings in Relation to Policy Goals
Consider Implementation
Issues
Set Policy Goals
Choose Assessment
Measure
Engage Stakeholders
Plan for Implementation
36
Implement New PracticesReview
Provider Reimbursement
Human Services Research Institute
Reconcile Levels and Rates
37
Step 3. Setting Individual Budget Allocations/Adjusting Rates
Budget Allocations Per Level
SIS Results
Individual Budget Levels
ReconcileBudgets & Rates
Proposed New Rate Structure
Cost Reviews Per Person and Service
ReconcileBudgets & Rates
Proposed New Rate Structure
Cost Reviews Per Person and Service
SIS Results
IndividualBudgets
Alignment
IBLs IBAs
Human Services Research Institute
What is the SIS?
Developed and released by AAMR in 2004
Originally designed to support person-centered planning with potential for resource allocation
Only adult version available (16 years plus – child version is under development)
Currently 14 states, 2 pr0vinces, and 19 countries using SIS in 13 languages
Perceived as strength-based
Must be purchased/licensed from AAIDD
38
The Supports Intensity Scale (SIS)and how it is being used
Human Services Research Institute
39
Person Centered Planning
Identify desired life goals/experiences/choices/
person center tools
SIS Identifies/Measuresupport needs
Planning for Individuals
Other Assessments HRST, Behavior
IndividualPlan
Natural and FundedResources
AAIDD
Supports Intensity Scale
Administration: Interview the person and others who know the person. Requires solid interviewing skills
Measures general support needs of an individual producing a number of scores
Includes basic support need areas like: A. Home Living Activities, B. Community Living Activities, and E. Health and Safety Activities SIS ABE – refers to the sum of the scores for these
3 areas that have been found useful in helping resource allocation
Identifies Medical and Behavior problems which are also significant cost predictors
40Human Services Research Institute
4141
What SIS Measures
Standard of a Typical Adult:
ExpectationsResponsibilities
Involvement in the activity
Individual Being
Assessed:Expectations
ResponsibilitiesInvolvement in the
activity
SIS measures
the difference
1. Type of Support2. Frequency of Support3. Daily Support Time
AAIDD
SIS and Funding Models
Georgia - using the SIS to develop individualbudget allocations for 11,200 people for their new support and comprehensive waivers
Oregon and Colorado - using SIS to inform the development of funding reimbursement models
Washington - linking SIS and other information to levels of payments and amounts of support services
Louisiana - informally using a SIS-informed funding system with 2,025 new NOW waiver applicants beginning in January 2009
Missouri – has assessed nearly 7,900 of about 8,200 service recipients and has begun to develop a data based resource allocation model
Ohio, Maine, New Mexico, North Carolina, North Dakota, Rhode Island, and Utah are exploring SIS applications
42Human Services Research Institute
Why do states pick the Supports Intensity Scale?
43
National norms – buying the bell shaped curve
Writing service plans with individuals, families, and providers
Captures support needs hence some of the natural supports used by individuals
Considers both behavioral and medical challenges
Has potential for helping to shape individual budgets and/or reimbursement levels
Human Services Research Institute
“Buying the Bell Shaped Curve”
44Human Services Research Institute
Adults with developmental disabilities served on September 2009 (33,345) are displayed with the Supports Needs Intensity (SNI) scaled to 5 points to an interval. In this graph the two most common SIS SNI results reflect the influence of comprehensive waivers averaging about 100 and support waivers averaging about 92.
State SIS Comprehensive Adult Waiver Results
State PeopleTotal SupportNeeds Index
Score (Range 38-143)
MedicalSupportNeeds
(Range 0-32)
BehavioralSupportNeeds
(Range 0-26)
SIS Norms
1,306 100.00 2.47 4.99
OR 401 101.00 3.27 4.98NE 288 100.42 3.23 4.81CO 4,014 100.00 2.83 6.13VA 521 101.74 2.43 4.77GA 5,269 98.23 1.96 3.81UT 3,728 100.09 2.29 4.36
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State SIS Support Adult Support Waiver* Results
State PeopleTotal SupportNeeds Index
Score (Range 38-143)
MedicalSupportNeeds
(Range 0-32)
BehavioralSupportNeeds
(Range 0-26)
SIS Norms 1,306 100.00 2.47 4.99CO SLS 2,835 93.20 2.82 3.51GA NOW 5,023 90.94 1.26 1.77LA NOW 443 92.67 1.92 1.90
* http://aspe.hhs.gov/daltcp/reports/2007/gaugingfr.htm46Human Services Research Institute
47
Uses SIS results to provide individual budgets for 11,200 individuals on the state’s new comprehensive and support waivers.
This individual budget model explains over 75% of the variance and is phased in over 5 years to reduce impacts.
Georgia Resource Allocation System November 2008
Human Services Research Institute
6 Levels of Funding First Used in Virginia6 levels of funding were identified to better match individual support needs with funding based on:
6 levels of SIS Medical, SIS Behavioral and SIS adaptive scores (ABE )
In the community, as the levels increase from 1 to 6 the overall support needs of the individuals increase as do dollars
48Human Services Research Institute
The 6 LevelsLevel 1: Individuals with below-average support needs
Level 2: Individuals with average support needs
Level 3: Individuals with above-average support needs
Level 4: Individuals with low-average to slightly above average support needs but high behavioral needs
Level 5: Individuals with extraordinary medical support needs
Level 6: Individuals with extraordinary behavioral support needs
49Human Services Research Institute
“We [people with disabilities] do notbelong in segregated institutions, sheltered workshops, special schools or nursing homes. Those places must close, to be replaced byhouses, apartments and condos inregular neighborhoods, andneighborhood schools that have the tools they need to include us. We can all live, work and learn in the community.” (Alliance for Full Participation, 2005)
There is no reason to believe that people with intellectual and other disabilities will settle for anything less.
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Questions?
What did they say?