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DEVELOPMENTAL DISABILITIES 2010:
TRENDS, TECHNOLOGIES & UNCERTAINTIES
IN THE STATES
David Braddock, Ph.D., Professor and Executive Director,
Coleman Institute for Cognitive Disabilities
Associate Vice President, University of Colorado System
2010 NASDDDS Annual Conference
Arlington, Virginia
November 18, 2010
Presentation © 2010 David Braddock
FINANCIAL CONDITIONS IN THE STATES
• TOTAL INFLATION-ADJUSTED PUBLIC I/DD
SPENDING DECLINED IN THE US IN 2009.
• THIS IS THE FIRST SUCH DECLINE SINCE
WE BEGAN COLLECTING FEDERAL
SPENDING DATA IN 1972, STATE BY STATE
DATA FROM 1977, AND PROBABLY SINCE
THE GREAT DEPRESSION.
TOTAL I/DD SPENDING DECLINED IN 2009
$60
$53.1 $52.9
$51.6
Billions of 2009 Dollars
$50
$43.1
$40
$28.3
$30
$20
$13.5
$10
$0
77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09
78 80 82 84 86 88 90 92 94 96 98 00 02 04 06 08
Fiscal Year
Source: Braddock, D., State of the States in Developmental Disabilities, 2010, preliminary.
ANNUAL % CHANGE IN INFLATION-ADJUSTED
I/DD SPENDING IN THE U.S.: 1978-09
14%
11.7%
12%
Percent Real Change
10%
8%
7.0%
7.0%
6.5%
6%
4%
2%
2.3%
3.2%
2.4%
1.7%
0.9%
0%
-0.1%
-2%
78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09
Fiscal Year
Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.
THE AVERAGE ANNUAL RATE OF TOTAL I/DD
SPENDING HAS STEADILY DECLINED BY DECADE
14%
12%
% REAL CHANGE
10%
8%
7.0%
6%
5.7%
4%
4.4%
2%
2.5%
0%
-2%
-4%
1970s
1980's
1990's
Fiscal Period
Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.
2000's
NUMBER OF STATES WITH INFLATIONADJUSTED CUTS IN I/DD SPENDING: 1978-2009
1978 -
7
1989 -
5
2000 -
1979 -
6
1990 -
4
2001 - 10
1980 - 18
1991 -
6
2002 -
1981 - 15
1992 - 11
2003 - 20
1982 - 14
1993 - 18
2004 - 16
1983 - 17
1994 -
8
2005 - 21
1984 - 10
1995 -
6
2006 - 23
1985 -
5
1996 - 10
2007 - 15
1986 -
5
1997 -
8
2008 - 22
1987 -
7
1998 -
4
(e)
2009 - 25
1988 -
6
1999 - 10
Source: Braddock, D., State of the States in Developmental Disabilities, 2010, preliminary.
6
2
INFLATION-ADJUSTED GROWTH
IN I/DD SPENDING IN THE STATES, 2008-09
State
% Change
Oregon
12%
District of Columbia
11%
Nevada
9%
Louisiana
8%
Alaska
7%
Washington
7%
North Dakota
5%
Arkansas
5%
New Hampshire
4%
California
4%
Connecticut
4%
Colorado
3%
Pennsylvania
3%
North Carolina
3%
Vermont
2%
Delaware
2%
West Virginia
2%
State
% Change
Utah
2%
Mississippi
2%
Massachusetts
2%
Illinois
1%
New Mexico
1%
Virginia
1%
Ohio
0%
Maine
0%
Kansas
0%
Minnesota
-1%
South Dakota
-1%
Nebraska
-1%
Wyoming
-1%
New Jersey
-1%
Tennessee
-1%
Kentucky
-1%
Wisconsin
-1%
State
Michigan
Arizona
New York
Missouri
Alabama
Indiana
Maryland
Iowa
Hawaii
Georgia
Montana
Texas
Florida
Idaho
Rhode Island
South Carolina
Oklahoma
UNITED STATES
Source: Braddock, D., State of the States in Developmental Disabilities, 2010, preliminary.
% Change
-1%
-1%
-2%
-2%
-2%
-3%
-4%
-4%
-6%
-7%
-7%
-7%
-8%
-9%
-10%
-11%
-12%
-0.1%
INSTITUTION SPENDING GROWTH IS NEGATIVE
OVER THE LAST TWO DECADES
8%
% REAL CHANGE
6%
5.5%
4%
2%
1.5%
0%
-2%
-1.9%
-2.6%
-4%
1970s
1980's
1990's
Fiscal Period
Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.
2000's
COMMUNITY SERVICES SPENDING ASCENDED
1970-90, THEN GROWTH SLOWED
14%
12%
% REAL CHANGE
10%
12.6%
11.5%
8%
8.3%
6%
4%
3.9%
2%
0%
-2%
-4%
1970s
1980's
1990's
Fiscal Period
Source: Braddock, D., Coleman Institute and Department of Psychiatry, University of Colorado, 2010.
2000's
Discovering and Doing What Works:
Evidence Based Policy
NASDDDS Conference
November 18, 2010
The NASDDDS Definition of Evidence-Based
Policy
Evidence-Based Policy is the responsible application of best
available evidence to the design, management and reform of
programs, services and supports for persons with intellectual
and developmental disabilities in a manner consistent with
achieving the outcomes desired by the Nation and the
individual states and with the independence, productivity,
inclusion and exercise of free will to individuals.
Adopted NASDDDS Research Committee, 2009
Increasing Focus on Sustainability of
Our System
• What can we (and future generations) afford?
• What can we justify based on:
• Relative costs of various options?
• Resources spent in comparison with
others in need?
• Outcomes achieved for resources spent?
What We Can Afford Will Be Affected by the
Growth Rate of Persons with Disabilities
45%
Total US Population
40%
People with Disabilities
35%
30%
34.7%*
People 65+ in Long-Term
Service
25%
20.2%*
20%
15.1%*
15%
10%
41.3%*
9.1%
6.0%
5%
0%
Between 2010-2020
Between 2020-2030
American Community Survey, 2006,
*Assume rates of disability and institutionalization remain the same as 2006
And By Increases in Children and Youth with
Conditions Associated with ID/DD Services
(+22% from 1999-2008)
Source: DOEd, IDD
The Front Edge of the Increased Number of Children
Identified With Autism Is Moving into State “DD” Systems
Percentage of Participants
16.5%
8.5%
6.2%
Age Group
N=12,382 (2007-2008)
Number with Autism Dx= 1,002
And More and More People Are Waiting for Services…
People Reported By States to Need Residential Services
Now or Within Next 12 Months, 1999-2009
140,000
123,249
114,916
120,000
100,000
88,349
83,828
75,288
80,000
66,246
69,787
1999
2001
60,000
40,000
20,000
0
2003
2005
2007
2008
2009
Billions of Dollars
Because of the Demographic Trends Medicaid
Spending is Projected to More than Double
Between 2009 and 2017
Source: Center for Medicare and Medicaid Services, Office of the Actuary
Future Growth in U.S. Labor Force (in hundred millions) Will Be
Much Slower Than the Needed Growth For Persons Providing
Long-Term Services (in millions)
141 million
158 million
165 million
192 million
Medicaid Is the Principal Support for Long-Term Services
for Persons with ID/DD With Greatly Expanded Numbers
of Medicaid ICF/MR and HCBS Recipients (1992-2009)
Source: Residential Information System Program, 2010
(86% of residential support recipients-away from family)
There Have Been Rapidly Expanded Medicaid Expenditures for
People with ID/DD; More Than All Medicaid Expenditures; More
Than All Long-Term Services and Supports
•Medicaid LTSS expenditures for persons with DD.--Grown a bit faster than overall
Medicaid
•Considerably faster than overall Medicaid LTSS
But Increasingly We Will Need to Make the Case for What We Have
Promised and Assess When, How, and For Whom We Deliver
•Increasing self-determination and personal control in decisions affecting people
with disabilities and their families
•Providing opportunities to people with disabilities to live and participate in their
own communities
•Improving quality of life for individuals and families as they define it for
themselves
•Supporting families as the most important and permanent unit of development,
protection, and lifelong assistance to persons with disabilities
•Investing in each individual’s developmental potential and capacity to contribute
in age-related roles as productive, respected community members
•Assuring access to sufficient, high-quality health and social supports to protect
each person’s health, safety, rights, and well-being
(From Keeping the promise: Self-Advocates Defining the Meaning of Community)
We Have a Long Way to Go in Opportunities for Choice
in Housing
100%
16.6%
90%
80%
Percentages
33.4%
43.0%
70%
48.8%
42.6%
50%
47.3%
41.4%
51.2%
30%
27.8%
20%
10%
0%
42.4%
63.0%
60%
40%
27.6%
15.6%
9.2%
34.6%
29.7%
0
HCBS ICF/MR
HCBS ICF/MR
Choice of
No. of Places
Current Home
Visited Before Choice
Full
Partial
None
2+
1
None
19.3%
0
6.5%
HCBS ICF/MR
Choice of In-Home
Support Staff
Full
Partial
None
Source: From CMS-funded evaluation of Medicaid HCBS in 6 states using National Core Indicators N= 2,950
And We Need to Attend to How States Pay for
This: State Budget Shortfalls in the Hundreds
of Billions?
FY 2009
FY 2010
FY 2011
FY 2012
0
-39
-40
-80
-120
-63
-36
-119
-71
-144
-137
-160
-200
Gaps offset by Recovery Act
Remaining Budget Gaps
Estimate by Center on Budget and Policy P, June 29, 2010
This Period Is A Lot Different Than What We’ve
Seen In Past Recessions
State Shortfalls (including offset by the Recovery Act), in billions
Last Recession
FY 02
FY 03
FY 04
-75
-80
This Recession
FY 05
FY 09
FY 10
FY 11
FY 12
0
-40
-45
-110
-120e
-50
-100
-196
-150
-200
-250
Source: Center on Budget and Policy Priorities, March 2010
-180e
Billions of Dollars
What Will Happen to Medicaid LTSS for Persons with
ID/DD When Federal Cost-Share Returns to Normal?
1-3
4-6
7-15
We Have Made Steady Progress Toward
More Integrated (at least smaller) Settings
16+
1996
2009
13.5%
(59,604)
29.4%
(95,336)
25.1%
(81,504)
17.4%
(56,389)
13.3%
(58,448)
46.8%
(205,888)
26.2%
(115,241)
28.1%
(91,045)
Total = 324,274
Total =440,457
Increased people: +116,000; increased 1-6 +150,000)
People’s Moves to Smaller Places Have Increased their Freedom to
Choose Housemates Schedule, Use of Time, and Use of Money
2
1.79
1.56
1.38 1.36
1.62
1.56
1.39
1.24 1.23
1.31
1.20
1.261.22
1.1
1.03
0.99
0.95
1
1 person with DD
2-3 persons with DD
4-6 persons with DD
0.82
0.77
7+ persons with DD
0.65
0
Mild ID
Moderate ID
Severe ID
Profound ID
Choice in daily schedule, use of free time, use of money, scored as
2 = complete, 1 = partial, 0 = none
Total
(Source: NCI)
Total Events
Community Participation Events in the Past Month by
Level of Intellectual Disability
Source: National Core Indicators (26 states, N=6,217)
Average Number of Times in Past Month
Different Levels of Community Participation in Different
Community Housing Models
Source: National Core Indicators (26 states, N= 6,217)
Average Number of Times in Past Month
But At Least with Community Participation, Size of
Smaller, Agency-Operated Settings Does Not Make a Big
Difference
2-3 Res
4-5 Res
6-8 Res
9-15 Res
16+ Res
Community participation is a count of the number of times people participate in the previous month in 7
areas of community activities (recreation, religious, shopping, going out to eat/drinks, running errands, social
Source: NCI (26 states)
outings/entertainment, vacation).
We’ve Found That People with ID/DD Are Generally Positive
About Their Well-Being in Places of 15 or Fewer Residents;
Loneliness is the Most Widespread Problem
% of total sample
Percent with positive well-being outcome
100
90
80
70
60
50
40
30
20
10
0
79.7
79.2
Scared
Home
Scared
N'hood
90.6
88.6
Staff
Home
Like
Home
83.2
92.8
90.2
Staff
Work
Like
Work
53.9
Lonely
Source: National Core Indicators
Happy
Size Affects Perceptions of Well-Being, But
Living in “Own Home” Seems Most Important
Source: National Core Indicators
The Future Will Likely Demand Efficiency, But So Has Past:
By Shifting from ICF/MR to HCBS, Average Real Dollar Per Person Annual
Expenditures for Medicaid LTSS Decreased by 30% between 1993 and
2009
1993 Expenditure Adjusted for 2009 CPI
$160,000
Average Per Person Expenditure
$140,000
$120,000
$92,665
$100,000
$72,288
$80,000
$30,488
$137,405
$60,000
$23,783
$40,000
$12,344
$20,000
$62,180
$48,505
$43,969
TOTAL
HCBS
$57,035
$25,176
$0
HCBS
ICF/MR
1993
ICF/MR
2009
TOTAL
Average Everyday Choice Score
The Shift for ICF/MR to HCBS Is Associated with Better
Outcomes: Everyday Choice Score for HCBS and ICF/MR
Recipients by Level of ID
Source: National Core Indicators, 6 States
Everyday Choice of daily schedule, use of free time, use of own money,
score for 2= complete choice, 1=partial choice, 0= no choice
Annual Expenditures (Long-Term and Health Services
Family-Based Services Are Growing in Large
Part Because Expenditures Are Much Lower on
Average for Adults in Family-Based Settings
$128,275
120,000
100,000
80,000
$70,133
60,000
$44,122
40,000
$25,072
20,000
0
Own Family
Host Family
Non-Family HCBS
(1,240)
Source: MSIS and NCI data from 4 states (1,240 Individuals)
ICF/MR
In the Past Decade We Have Increased the Number
of People Receiving ID/DD Services and Supports
While Living with Family Members
1,200,000
1,000,000
800,000
600,000
Away From Family
With Family
674,044
1,033,173
902,285
440,457
402,277
348,394
400,000
200,000
325,650
(48%)
500,004
(55%)
592,716
(57%)
0
1998
2003
2009
And Within Medicaid Supported Services Rapidly Growing
Numbers and Proportions of HCBS Recipients Are Living
with Family Members
Away From Family
With Family
600,000
562,067
500,000
402,438
400,000
290,701
231,401
300,000
223,164
200,000
100,000
161,229
49,262
62,462
0
61,935
(27.8%)
171,037
(42.5%)
271,366
(48.3%)
13,200 (21.2%)
1992
1997
2003
2009
We’ve Seen That Adults Report Good Quality of Life
Outcomes While Living with Family Members
• No difference on:
– Feeling afraid in your
neighborhood
• Better results for those
NOT living with family
on:
– Home staff nice & polite
Source: National Core Indicators
• Better results for those
living with family on:
–
–
–
–
Loneliness
Feeling afraid at home
Feeling happy
Liking home
Average Number of Times In Past Month
It Appears that “DD” Services Are Working OK for Growing
Numbers of People Identified With Autism With Size Effects
Comparable to Others in Agency-Operated Settings
Community participation is a count of the number of times people participated in the previous
month in 7 areas of community activity (recreation/sports, religious, shopping, going out to
eat/drink, running errands, entertainment/social, vacation)
Workforce Challenges
• DSP Turnover – 40-55% annually
• High costs of turnover
– Hiring & training = $2,000 - $5,000 per DSP
– 8%-10% vacancies: increased stress, overtime
– Effects on people receiving support
• Training challenges
– Limited quality
– Rarely connected to professional competencies
– Increasing challenges of access
So If the Struggles of the Last 2-3 Years Are The New
Normal, What Can We Expect and Advocate?
• How will expectations for families change?
•Prolonged living in families
•Increased roles for families in out-of-family living?
•Increased family-directed supports/opportunities for creativity?
•How will expectations for cost containment change?
•Intolerance of costly models (institutions, high staff ratios)?
•Trading rules for reduced cost?
•Uniform individual budgeting/allocations based on characteristics
•What Principles/Possibilities Are We Willing to Entertain?
•No one gets more than needed until all get minimum needed?
•That compared with others with disabilities we have a rich system?
•That continuing in the ways we know may pose danger to future?
•That others deserve access and support?
Evidence As Key Component and Quality of
Sustainability
• Sustainable systems are economically viable for the long term.
• Sustainable systems achieve outcomes valued in the society.
• Sustainable systems have informed, active and mobilized
constituencies.
• Sustainable systems avoid demanding ever greater shares of
public resources by being efficient and effective.
• Sustainable systems have built-in capacities to gather, analyze,
report and use data to improve performance.
• Sustainable systems are flexible and change to new knowledge
and/or demands.
• Sustainable systems can accommodate shifting priorities within
society.
• Sustainable systems effectively develop future generations.