University of Colorado
Advisory
Committee
Sibling
Leadership
Network
National
Conference of
State Legislatures
National Youth
Leadership
Network
 Current AIDD Grant Period (2012-2017)
 Two data collection cycles:
 FYs 2012 and 2013—Completed
 FYs 2014 and 2015 (Start fall of 2015)
 Review state budget and program document review;
 Develop and implement 51 tailored state spreadsheets;

collection with territories began in 2013
 Obtain, interpret, and verify financial and programmatic data with
state officials; and
 Disseminate and provide technical assistance.
BUDGET CATERORIES/VARIABLES FOR
FOR STATE SPENDING/DATA COLLECTION
State
Local
Federal
COMMUNITY SERVICES FUNDS (15 or Fewer Persons)
General Funds
Medicaid Match
Other State Funds
Local Funds
Local Medicaid
Match
Public ICF/ID
Private ICF/ID
HCBS Waiver
Rehab Services
Clinic Services
Targeted Case Mgt.
Personal Care
Admin. Other
Other Federal
Title XX/SSGB
SSI/ADC for HCBS
Waiver
STATE INSTITUTIONAL SERVICES FUNDS (16 OR MORE
PERSONS)
General Funds
Medicaid Match
Other State Funds
Local Funds
Local Medicaid
Match
Federal ICF/ID
Other Federal
PRIVATE INSTITUTIONAL SERVICES FUNDS (16 OR MORE
PERSONS)
General Funds
Medicaid Match
Other State Funds
Local Funds
Local Medicaid
Match
Federal ICF/ID
Other Federal
States report State Plan
Medicaid (Personal Care,
Rehab, Clinic, TCM);
managed care (e.g. VT,
WI); 1915(b/c) Waivers
(e.g. MI) and Section 1115
Research and
Demonstration Waivers
(e.g. AZ)
 Overview of IDD
Financial and
Programmatic
Trends through FY
2013
 Just published by
AAIDD
The Impact of the Great Recession
$70
2011: $57.6
$61.6
Billions of 2013 Dollars
$60
$57.8
$54.4
$50
$45.8
$40
$31.3
$30
$20
$15.2
$10
$0
77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09 11 13
78 80 82 84 86 88 90 92 94 96 98 00 02 04 06 08 10 12
Fiscal Year
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
UNITED STATES
12.0%
10.3%
10.0%
Percent Real Change
8.0%
7.0%
7.1%
6.0%
6.0%
4.2%
4.0%
3.3%
2.4%
2.0%
1.6%
2.4%
2.0%
1.5%
0.0%
-0.6%
-2.0%
78 80 82 84 86 88 90 92 94 96 98 00 02 04 06 08 10 12
79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09 11 13
Fiscal Year
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
State
Kentucky
Mississippi
Louisiana
Virginia
Missouri
Alaska
Pennsylvania
West Virginia
Montana
Georgia
Delaware
Connecticut
Maryland
South Carolina
Maine
North Dakota
Massachusetts
%
Change
40.3%
38.8%
35.3%
35.1%
34.8%
30.1%
25.7%
23.4%
20.6%
19.9%
15.7%
14.4%
13.2%
13.0%
12.7%
12.5%
12.4%
Iowa
New Jersey
District of Columbia
Nebraska
Texas
Indiana
Utah
Tennessee
New Hampshire
North Carolina
Michigan
Alabama
Wisconsin
New York
Ohio
California
Oregon
%
Change
12.2%
11.8%
11.4%
10.8%
10.8%
9.2%
8.7%
8.1%
8.0%
8.0%
6.3%
5.8%
5.2%
4.6%
4.2%
4.2%
4.0%
% Change
State
Illinois
3.9%
Oklahoma
3.5%
Wyoming
2.3%
Nevada
1.6%
South Dakota
1.4%
Washington
1.3%
Minnesota
0.7%
Kansas
0.3%
New Mexico
-0.2%
Idaho
-0.7%
Arizona
-1.4%
Colorado
-1.6%
Arkansas
-2.7%
Rhode Island
-5.2%
Vermont
-7.2%
Florida
-9.4%
Hawaii
-11.4%
United States
8.5%
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
1978 - 7
1990 -
3
2002 - 4
1979 - 6
1991 -
6
2003 - 16
1980 - 16
1992 - 11
2004 - 17
1981 - 14
1993 - 18
2005 - 24
1982 - 14
1994 -
8
2006 - 15
1983 - 16
1995 - 11
2007 - 15
1984 - 8
1996 - 11
2008 - 17
1985 - 5
1997 - 10
2009 - 23
1986 - 5
1998 -
4
2010 - 22
1987 - 7
1999 - 10
2011 - 31
1988 - 7
2000 -
6
2012 - 13
1989 - 6
2001 - 10
2013 - 14
ICF/ID (6 or fewer)
7-15 Person Settings
5%3%
Public Institutions (16+)
10%
3%
Private Institutions (16+)
7%
Supported Employment (1.4%)
Family Support
6 Person or Fewer
58%
Residential &
Related Community
Services
13%
Supported Living/
Personal Assistance
$61.46 Billion
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
 Fiscal Effort is a measure
of how much a state spends
on I/DD LTSS per $1,000 of
statewide personal income.
 …in other words, how
much does your state
spend after you control
for state wealth – this
allows you to compare your
state to any other state
regardless of state wealth.

IL Total Fiscal Effort: $2.70
 Ranks 43rd
 US $4.40

IL Community Fiscal Effort: $2.01
 Ranks 47th
 US $3.81
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
…It made up 78% of total I/DD spending in 2013
Home and Community Based
Services (HCBS) Waiver:
Intermediate
Care Facilities
for Persons with
I/DD
(21%)
Other
Medicaid (5%)
•
Authorized in 1981 as a way
of keeping people out of
institutions while lowering
costs
•
Supported almost 686,000
people with DD in FY 2013
•
Reimburses states for a
variety of community-based
services and supports
•
Allows states to determine
how many people they will
serve and what services they
will offer
Other
State Funds (12%)
Other Federal Funds
(10%)
Home and
Community
Based Services
(HCBS) Waiver
(51%)
Total I/DD Spending: $61.48 Billion
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
New York
Maine
Vermont
District of Columbia
Minnesota
Connecticut
Alaska
Rhode Island
North Dakota
Wyoming
West Virginia
New Hampshire
Louisiana
Wisconsin
Pennsylvania
New Mexico
Iowa
$277
$241
$240
$232
$231
$212
$211
$198
$193
$182
$181
$161
$157
$152
$140
$137
$130
18
19
20
21
22
23
24
25
26
27
28
29
30
31
32
33
34
Maryland
South Dakota
Nebraska
Oregon
Massachusetts
Indiana
Ohio
Kansas
Kentucky
Delaware
Missouri
Arizona
Michigan
Tennessee
Montana
New Jersey
Washington
$128
$125
$124
$122
$118
$117
$117
$113
$107
$106
$104
$98
$97
$96
$91
$88
$87
35
36
37
38
39
40
41
42
43
44
45
46
47
48
49
50
51
Virginia
Oklahoma
Hawaii
Georgia
Colorado
Alabama
North Carolina
Arkansas
California
South Carolina
Utah
Illinois
Florida
Texas
Idaho
Mississippi
Nevada
UNITED STATES
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
$78
$76
$74
$66
$63
$62
$61
$61
$60
$59
$57
$49
$44
$42
$40
$30
$27
$100
Northeast
$218
New England
$167
Mid-Atlantic
$124
Region
Great Plains
$115
Great Lakes
$112
Northwest
$98
Rocky Mountain
$83
Southwest
$65
Pacific
$64
Southeast
$58
U.S.
$0
$100
$50
$100
$150
$200
$250
Federal-State Waiver Spending per Capita (General Population)
2. Northeast (NJ, NY, PR, VI)
10. Northw est (AK, ID, OR, WA)
1. New England (CT, ME, MA, NH, RI, VT)
8. Rocky Mountain (CO, MT, ND, SD, UT & WY)
3. Mid-Atlantic (DE, DC, MD, PA, VA, WV)
6. Southw est (AR, LA, NM, OK, TX)
7. Great Plains (IA, KS, MO, NE)
9. Pacific (AS, AZ, CA, CNMI, GUAM, HI, NV)
5. Great Lakes (IL, IN, MI, MN, OH, & WI)
4. Southeast (AL, FL, GA, KY, MS, NC, SC, TN)
 88 HCBS Waiver Applications for 2010:
 types of services
▪ definitions of services (n=1,329)
 # of “users”
 average units per user
 average cost per unit
 93 HCBS Waiver Amendments
Rizzolo, M. C., Friedman, C., Lulinski-Norris, A.,
& Braddock, D. (in press – Feb/2013).
Home and Community Based Services
(HCBS) Waivers: A nationwide study of
the states. Intellectual and Developmental
Disabilities.
 reasons for filing amendments
Jargon
Gobbledygook
Residential
Habilitation
Companion/
Homemaker/
Chore/PA/SL
Community
Transition
Supports
Day
Habilitation
Prevocational
Services
Family Training
and Counseling
Over
1,300
definitions
Adult Day
Health
Financial
Support
Services
Care
Coordination
Assistive and
Medical
Technologies
Supported
Employment
Transportation
Health and
Professional
Services
Respite
Individual
Goods and
Services
Self-Advocacy
Training
Education
Recreation and
Leisure
- Prevocational Services (3%)
Supported
Employment
3%
- Family Training and Counseling (2%)
- Transportation (2%)
- Care Coordination (2%)
- Health and Professional Services (2%)
Remainder
15%
- Respite (1%)
- Assistive and Medical Technologies (1%)
Day
Habilitation
19%
o AT and Environmental Mods (0.5%)
o Med Equip and PERS (0.7%)
Residential
Habilitation
53%
Homemaker/
Chore/PA/SL
11%
- Community Transition Supports (<1%)
- Financial Support Services (<1%)
- Adult Day Health (<1%)
- Individual Goods and Services (<1%)
- Self Advocacy Training (<1%)
- Education (<1%)
- Recreation and Leisure (<1%)
United States 2013
Supervised Residential Setting
634,509
13%
71%
With Family Caregiver
16%
Alone or with Roommate
786,156
3,557,246
TOTAL: 4,977,911 PERSONS
Source: Braddock, D., et al., State of the States in Developmental Disabilities, 2015,
based on Fujiura (1998, 2013) and Larson et al. (2001).
7-15 ICFs/ID
20,095
7-15 Group Homes
35,908
33%
3%
Nursing Facilities 16+ 6%
26,678
4%
Private Institutions 16+
4%
22,256
4%
Public Institutions 16+
24,675
6/Fewer Group, Foster &
Host Homes, ICFs/ID,
Apartments
210,941
6/fewer Total:
504,897 (79.6%)
46%
6/Fewer
Supported Living
293,956
634,509 Individuals Served
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
United States 2013
Caregivers Aged 60+
863,314
Caregivers Aged <41
1,446,051
25%
40%
35%
Caregivers Aged 41-59
1,247,882
TOTAL: 3,557,246
PERSONS
Source: Braddock, D., et al., State of the States in Developmental Disabilities, 2015,
based on Fujiura (1998, 2013) and Larson et al. (2001).
4.5
Total I/DD Caregiving Families
Families Supported by State I/DD Agencies
MILLIONS OF FAMILIES
4.0
3.5
3.0 2.89
2.99
3.32
3.38
0.38
0.41
3.48
3.51
3.56
0.48
0.46
0.46
3.14
2.5
2.0
1.5
1.0
0.5
0.0 0.10
0.16
0.29
88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 13
FISCAL YEAR
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
$5.0
Non-Waiver Family Support Spending
Federal-State HCBS Waiver Spending $4.2 $4.2 $4.1
$4.0
$3.2
$2.9
Billionsof 2013Dollars
$3.0
$2.4
$2.0
$1.7
71%
$1.2
80% 82%
64%
$1.0
53%
$0.5
$0.2
28%
37%
43%
$0.0
86878889909192939495969798990001020304050607080910111213
Fiscal Year
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
200
171176
175
147
133
150
113
Numberof Closures
125
100
77
75
46
50
27
25
1
2
7
10
0
1969
1970
1975
1980
1985
1990
1995
2000
2005
2010
2015
2020
Year
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
DISTRICT OF COLUMBIA (1991)
NEW HAMPSHIRE (1991)
VERMONT (1993)
RHODE ISLAND (1994)
ALASKA (1997)
NEW MEXICO (1997)
WEST VIRGINIA (1998)
HAWAII (1999)
MAINE (1999)
INDIANA (2013)
MICHIGAN (2009)
OREGON (2009)
MINNESOTA (2011)
ALABAMA (2012)
Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.
Smallest Institutional Census, FY 2013
1
Idaho
36
2
Nevada
47
3
Montana
55
4
Delaware
61
5
Wyoming
78
6
North Dakota
92
7
Arizona
106
8
Nebraska
126
9
Maryland
129
10
South Dakota
140
11
Colorado
149
12
Tennessee
182
Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.
Largest Institutional Census, FY 2013
1
Texas
3,932
2
New Jersey
2,341
3
Illinois
1,790
4
California
1,348
5
North Carolina
1,300
6
Mississippi
1,157
7
Pennsylvania
1,069
8
Ohio
1,066
9
New York
1,015
Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.
37 States with Remaining Institutions
New York
Texas
Ohio
Illinois
New Jersey
Connecticut
Arkansas
California
Mississippi
North Carolina
Pennsylvania
South Carolina
Virginia
Florida
Kentucky
Massachusetts
Missouri
Washington
Georgia
Oklahom a
Wisconsin
Colorado
Iow a
Kansas
Louisiana
Maryland
Tennessee
Arizona
Delaw are
Idaho
Montana
Nebraska
Nevada
North Dakota
South Dakota
Utah
Wyom ing
0
24
13
10
7
7
6
5
•10 States have
one state
institution
remaining
• New York’s 24
4
“units” had an
average size of 42
daily residents.
3
2
• 13 states and DC
have closed all
state-operated
institutions.
1
5
10
15
20
25
Number of Remaining Institutions
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
$800
$701
$700
$612
$562
AdjustedCostsPer Day
$600
$488
$500
$397
$400
$433
$522
$551
$317
$267
$300$245
$200
$236
$100
$0
79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09 11 13
80 82 84 86 88 90 92 94 96 98 00 02 04 06 08 10 12
Fiscal Year
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
160
150,207
2002-13 Projection
1992-2013 Projection
Thousands of Residents
140
120
100
80
60
40
24,727 (2013)
20
0
77
82
87
92
97
02
07
Year
12
17
22
0 (2024)
27
30
0 (2029)
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
 http://www.stateofthestates.org/index.php/i
ntellectualdevelopmentaldisabilities/interactive-charts
www.StateoftheStates.org
1. Total Fiscal Effort for I/DD Services
2. Community Fiscal Effort for I/DD Services
3. Institutional (16+) Fiscal Effort for I/DD Services
4. Community Spending as a Percent of Total I/DD Services
5. Percent of Total Out-of-Home Placements in Settings for 6 or Fewer Persons
6. Percent of Total Statewide I/DD Care-giving Families Supported by State I/DD Agencies
7. Aging I/DD Caregivers as Percent of Total Persons with I/DD
8. Individual and Family Support Spending per Capita
9. Home and Community Based Services (HCBS) Waiver Federal-State Spending per Capita
10. Average Annual Cost of Care in State-Operated 16+ Person I/DD Institutions
11. Average Daily Cost of Care in State-Operated 16+ Person I/DD Institutions
12. Nursing Facility Residents with I/DD, Per 100,000 of the State Population
13. Six-or-fewer Person Community Spending as a Percent of Total I/DD Spending
14. Unmatched State Funds Potentially Available to Match Additional Federal Medicaid Funding
15. Medicaid Percent of Total I/DD Spending
16. Public Spending for Family Support and Supported Living as a % of Total I/DD Spending
Out-of-Home Placements
 50th in the % of people with I/DD in supervised residential settings for 1-6 people
- p. 21
Aging Caregivers
 Approximately 33,000 people with IDD living with caregivers over age 60
(estimated) – p. 65
Individual and Family Support
 use of supported living/personal assistance $9.70 per capita (US average
$24.92) – p. 48
 supported employment per capita $0.68 per capita (vs. $2.76 US average) - p.
54
 24th in spending per family (in family support programs) - p. 58
 44th in # of families supported (in family support programs) per capita – p. 58
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015
Financial Commitment
 43rd in total fiscal effort (down from 42nd in 2011) – p.18

this is a measure of state commitment to funding services with DD
 47th in community fiscal effort (down from 45th in 2011) –
p.18

this measures how much the state spends in the community including
residential settings for 15 or fewer people and other support services
(family supports, supported employment, personal care)
 45th in spending "per capita" on HCBS Waiver - p.39
Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities,
2015