wanted: an improved service response - reinventing quality

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

http://www.hsri.org/�

mailto:[email protected]�

mailto:[email protected]�

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


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


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


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


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


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


Florida


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


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


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%.


Texas


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

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30.0%

50.0%

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Sout

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Flor

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New

Jer

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Cal

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Was

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Haw

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Del

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Nev

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Mas

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Medicaid expenditures per state citizen

Perc

enta

ge re

ciev

ing

in-h

ome

supp

orts


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


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


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


Florida


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.


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


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.


Action Steps


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


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


Texas Must Do Better

Insufficient Spending

Inefficient Spending

Increasing Demand


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.


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.


Texas


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.


Action Area 3: Expand Community Capacity

Illinois


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


$

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

32

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.


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.


“It’s impossible to

individualize service until you’ve individualized the funding.”

Russ Pittsley


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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


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


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


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


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


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


“Buying the Bell Shaped Curve”


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


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


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


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


“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.


Questions?

What did they say?

wanted: an improved service response - reinventing quality

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