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The State of the States in Intellectual and Developmental Disabilities: 2017

Authors:
David Lawrence Braddock at University of Colorado
David Lawrence Braddock
Richard Hemp at University of Colorado
Richard Hemp
Amie Lulinski at University of Colorado
Amie Lulinski
Emily Tanis at University of Kansas
Emily Tanis
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Abstract

Federal and State Financial Supports Utilized in Data Collection: I. Institutional Services Financial Data; Public 16+ Institutional Services Funds Including State and Federal Funds; Private 16+ Institutional Services Funds including State Funds and Federal Funds. II. Community Services Financial Data -- Community Services Funds for 15 or Few Persons (includes State Funds and Federal Funds). Key Program and Participant Categories: Community Residential Settings for 6 or Few Persons (includes public and private ICFs/ID, support living, personal assistance and other residential settings, e.g. group homes, apartments and foster/host homes); Community Residential Settings (7-15 persons), includes public and private ICFs/ID, and other residential settings; Day/Work Program Participants (sheltered employment/work activity, day training, supported/competitive employment); HCBS Waiver Participants; and Public and Private Institutional Settings (16+ persons), includes State-operated Institutions, Private ICFs/ID, Other private residential facilities and Nursing facility residents with I/DD. Data Collection: State survey instruments (primary data sources) and National data sources (secondary data sources).
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David Braddock, PhD
Richard Hemp, MA
Amie Lulinski, PhD
Emily Shea Tanis, PhD
17th Annual Coleman Institute Conference on
Cognitive Disability and Technology
November 2, 2017
Broomfield, CO
Financial and
Programmatic Trends
Through FY 2015
Published by
Sources: Braddock et. al. (1981-2017)
I. INSTITUTIONAL SERVICES FINANCIAL DATA
(16 or more persons)
A. PUBLIC 16+ INSTITUTIONAL SERVICES FUNDS
1. State Funds
a. ICF/ID Medicaid Match
b. General Funds (not including state ICF/MR match)
c. Other State Funds (not including state ICF/MR match)
d. Local Funds in Excess of Match
2. Federal Funds
a. Federal ICF/ID
b. Title XX/Social Services Block Grant
c. Other Federal Funds
B. PRIVATE 16+ INSTITUTIONAL SERVICES FUNDS
1. State Funds
a. ICF/ID Medicaid Match
b. General Funds (not including state ICF/ID match)
c. Other State Funds (not including state ICF/ID match)
d. Local Funds in Excess of Match
2. Federal Funds
a. Federal ICF/ID
b. Other Federal Funds
II. COMMUNITY SERVICES FINANCIAL DATA
(15 or fewer persons)
A. COMMUNITY SERVICES FUNDS FOR 15 OR FEWER PERSONS
1. State Funds
a. ICF/ID Medicaid Match
b. General Funds (not including state ICF/ID match)
c. Other State Funds (not including state ICF/ID match)
d. Local/County Funds in Excess of Match
e. SSI State Supplement Funds
2. Federal Funds
a. Public ICF/ID (<16)
b. Private ICF/ID (<16)
c. HCBS Waiver
d. Other Medicaid Services
1. Rehabilitation Services
2. Clinic Services
3. Targeted Case Management
4. Personal Care Services
5. Other Medicaid Services
e. Title XX/Social Services Block Grant
f. Other Federal Funds
g. SSI and Adults Disabled in Childhood (ADC) benefits –
HCBS Waiver participants
I. COMMUNITY RESIDENTIAL SETTINGS (1-6 PERSONS)
A. Public ICFs/ID
B.
Private ICFs/ID
C.
Supported Living
D.
Personal Assistance
E. Other residential settings
(Group homes, apartments, foster, host homes)
II. COMMUNITY RESIDENTIAL SETTINGS (7-15 PERSONS)
A.
Public ICFs/ID
B.
Private ICFs/ID
C.
Other residential settings for 7-15 persons
III. DAY/WORK PROGRAM PARTICIPANTS
A. Sheltered employment/work activity
B. Day habilitation ("day training")
C. Supported/competitive employment
IV. HCBS WAIVER PARTICIPANTS
V. PUBLIC & PRIVATE INSTITUTIONAL SETTINGS (16+ PERSONS)
A.
State-operated institutions
B.
Private ICFs/ID
C.
Other private residential facilities
D.
Nursing faciltiy residents with I/DD
Sources: Braddock (1981, 2002a); Braddock, Hemp, & Fujiura (1987).
SUMMARY OF KEY PROGRAM/PARTICIPANT
CATEGORIES FOR DATA COLLECTION
Table 2
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
State survey
instruments (primary
data sources)
National data sources
(secondary data
sources)
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Selected examples
Review of:
▪Published budget documents
▪Conversations with state IDD agency personnel
Data collection tool
▪Excel spreadsheets
▪Revenue and expenditure data
▪Number of participants
▪Spending, revenue, and participant data on specific support
categories
▪Accompanied by an instruction guide and definitions
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
•Continued decline in public/private institutions
•Increased HCBS Waiver spending, decline in
public and private facility ICF/ID spending
•Largest growth is in “Individual and Family
Support” (Family support, supported living and
supported employment)
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
1848
1853
1858
1863
1868
1873
1878
1883
1888
1893
1898
1903
1908
1913
1918
1923
1928
1933
1938
1943
1948
1953
1958
1963
1968
1973
1978
1983
1988
1993
1998
2003
2008
2013
2015
0
50,000
100,000
150,000
200,000
250,000
Daily Census
10
97,209
194,650
21,103
2015
1938
1967
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 13 14 15
Fiscal Year
$0
$30,000
$60,000
$90,000
$120,000
Inflation-Adjusted Dollars per Participant per Year
$6,924 $12,402 $15,271 $15,950 $16,518
$73,036
$88,815
$79,849
$78,947
$73,384
Source: Braddock et al., Coleman Institute and Department of Psy chiatry , University of Colorado, 2017
7+ Person Residences
Individual and Family Support
-17.4%
+33.2%
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
1. District of Columbia (1991)
2. New Hampshire (1991)
3. Rhode Island (1994)
4. Alaska (1997)
5. New Mexico (1997)
6. West Virginia (1998)
7. Hawaii (1999)
8. Maine (1999)
9. Minnesota (2000)
10. Indiana (2007)
11. Michigan (2009)
12. Oregon (2009)
13. Alabama (2012)
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
1969 1970 1975 1980 1985 1990 1995 2000 2005 2010 2015 2020
Year
0
25
50
75
100
125
150
175
200
225
Number of Closures
12710 27 46
77
112
133 147
173 181
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
77 82 87 92 97 02 07 12 17 22 27 30
Year
0
20
40
60
80
100
120
140
160
Thousands of Residents
Projected Trend in Public Institutional
Census: 1977-2030
150,207
21,103 (2015)
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
77
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
10
11
12
13
14
15
Fiscal Year
$0
$10
$20
$30
$40
$50
$60
$70
$80
Billions of 2015 Dollars
$15.9
$32.7
$48.0
$56.9
$62.6
$65.2
One reduction:-0.8% in 2011
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
13.6%
10.7%
TOTAL IDD SPENDING: $65.21 BILLION
General funds, special tax
levies, lotteries, other state
and local funds
SSI/ADC, Title XX/SSBG,
other Federal funds
Federal, State, Local
Medicaid*
*TOTAL FEDERAL-STATE MEDICAID: $49.4 BILLION
a) HCBS WAIVER (70%)
b) PUBLIC & PRIVATE ICFs/ID (22%)
c) STATE PLAN MEDICAID (8%)
Figure 1
FEDERAL, STATE, and LOCAL MEDICAID IS
THREE-FOURTHS OF TOTAL IDD SPENDING IN FY 2015
Source:
Braddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2017.
75.8%
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
683,290
793,615
3,590,998
TOTAL: 5,067,903 PERSONS
13.5%
15.7%
70.9%
Figure 26
UNITED STATES
ESTIMATED DISTRIBUTION OF INDIVIDUALS
WITH IDD BY LIVING ARRANGEMENT, FY 2015
Source:
Braddock et al., Coleman Institute and Department of Psychiatry,
University of Colorado, 2016, based on Fujiura (2015).
SUPERVISED RESIDENTIAL SETTING
ALONE OR
WITH ROOMATE
WITH FAMILY
CAREGIVER
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
1980 1990 2000 2010 2015 2020 2030
Fiscal Year
0
200
400
600
800
1,000
Thousands of Persons
259,909 321,552
441,101
594,389 680,851 737,950
880,226
6 or Fewer Person Settings
7-15 Person Settings
Public and Private 16 + Person Settings
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
683,290
793,615
3,590,998
TOTAL: 5,067,903 PERSONS
13.5%
15.7%
70.9%
Figure 26
UNITED STATES
ESTIMATED DISTRIBUTION OF INDIVIDUALS
WITH IDD BY LIVING ARRANGEMENT, FY 2015
Source:
Braddock et al., Coleman Institute and Department of Psychiatry,
University of Colorado, 2016, based on Fujiura (2015).
SUPERVISED RESIDENTIAL SETTING
ALONE OR
WITH ROOMATE
WITH FAMILY
CAREGIVER
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Total: 3,590,998 Caregivers
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
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 14 15
FISCAL YEAR
0.0
0.5
1.0
1.5
2.0
2.5
3.0
3.5
4.0
4.5
5.0
MILLIONS OF CAREGIVING FAMILIES
4% 6% 10% 13% 14% 16% 15% 15% 17%
2.89 2.99 3.14 3.32 3.38 3.48 3.52 3.57 3.59
Total IDD Caregiving Families
Families Supported by State IDD Agencies .
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Fiscal effort:
Is a ratio of a state’s spending for IDD
services per $1,000 of the state’s
total personal income;
▪Allows for state-to-state comparisons
controlling for state wealth;
▪Allows us to rank states by the proportion
of their aggregate statewide personal
income devoted to financing IDD services.
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
1 New York $9.06 18 Connecticut $5.25 35 Michigan $3.71
2 Maine $8.02 19 New Mexico $5.17 36 Tennessee $3.62
3 North Dakota $7.92 20 Alaska $5.12 37 California $3.50
4 West Virginia $7.57 21 Delaware $4.95 38 Maryland $3.35
5 Louisiana $7.25 22 Oregon $4.88 39 Virginia $3.18
6 District of Columbia $7.15 23 South Dakota $4.73 40 Kansas $3.15
7 Kentucky $6.96 24 North Carolina $4.66 41 Washington $3.13
8 Minnesota $6.95 25 Nebraska $4.51 42 Oklahoma $2.87
9 Iowa $6.88 26 Montana $4.41 43 Utah $2.75
10 Ohio $6.77 27 Idaho $4.39 44 Illinois $2.72
11 Vermont $6.53 28 Missouri $4.27 45 Georgia $2.47
12 Massachusetts $5.94 29 Wyoming $4.13 46 Hawaii $2.31
13 Wisconsin $5.73 30 New Hampshire $4.12 47 Colorado $2.29
14 Indiana $5.60 31 Mississippi $4.02 48 Alabama $2.20
15 Rhode Island $5.54 32 South Carolina $3.80 49 Texas $2.19
16 Arkansas $5.28 33 Arizona $3.77 50 Florida $1.99
17 Pennsylvania $5.26 34 New Jersey $3.73 51 Nevada $1.57
UNITED STATES: $4.30
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
77 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 10 11 12 13 14 15
Fiscal Year
$0.00
$1.00
$2.00
$3.00
$4.00
$5.00
Spending ($) per $1,000 Personal Income
$2.21 $2.57
$3.45
$3.90 $4.06
$4.46
$4.32
$4.43 $4.30
$0.56
$0.98
$2.15
$3.06 $3.31
$3.78
$3.69$3.74 $3.81
$1.66
$1.71 $1.59
$1.30
$0.83 $0.75 $0.70$0.64
$0.58 $0.49
Total Fiscal Effort
Community Services
Institutional Settings (16+)
-30%
-4%
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
777879808182838485868788899091929394959697989900010203040506070809101112131415
Fiscal Year
$0
$10
$20
$30
$40
Billions of 2015 Dollars
$12.2
$18.8
$17.5 $16.6
$15.6 $14.2 $13.6
$11.0
$0.2
$4.2
$19.9
$25.0
$28.7
$29.7
$32.4
$34.5
HCBS Waiver
ICF/ID
-23%
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
UNITED STATES $107
1 District of Columbia $278 18 Iowa $154 35 Virginia $87
2 Vermont $274 19 New Mexico $154 36 Oregon $84
3 Minnesota $260 20 Indiana $140 37 North Carolina $78
4 New York $255 21 Nebraska $135 38 Oklahoma $78
5 North Dakota $240 22 Maryland $129 39 Hawaii $75
6Maine $236 23 South Dakota $129 40 Colorado $73
7Alaska $229 24 Delaware $125 41 South Carolina $71
8 Rhode Island $217 25 Ohio $122 42 Arkansas $69
9 Connecticut $205 26 Missouri $115 43 California $69
10 West Virginia $196 27 Michigan $114 44 Alabama $66
11 Kentucky $193 28 Arizona $114 45 Utah $62
12 Massachusetts $174 29 Idaho $101 46 Illinois $60
13 Wisconsin $168 30 New Jersey $101 47 Georgia $49
14 Pennsylvania $165 31 Tennessee $101 48 Florida $46
15 Wyoming $164 32 Montana $99 49 Texas $35
16 New Hampshire $164 33 Kansas $95 50 Nevada $33
17 Louisiana $155 34 Washington $93 51 Mississippi $24
Federal-State HCBS Spending Per Capita in 2015
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
Medicaid spending is likely to be cut
Medicaid cuts may impact Medicaid-
funded institutions, community-based
services, and health care
The impact on IDD supports may be 18%
or more
Likely much higher in health care for poor and
older citizens.
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
21,182
12,695
8,579
8,223
8,088
5,900
5,271
5,023
4,966
4,827
4,538
4,238
4,175
4,085
4,084
4,037
3,548
3,280
3,220
3,115
3,019
2,776
2,768
2,580
2,456
2,290
2,262
2,174
1,826
1,586
1,515
1,458
1,421
1,391
1,365
1,201
1,143
1,114
1,069
1,033
857
726
726
563
560
526
501
468
440
359
339
0 6,000 12,000 18,000 24,000
New York
California
Pennsylvania
Ohio
Texas
North Carolina
Indiana
Michigan
Minnesota
Florida
Louisiana
New Jersey
Illinois
Wisconsin
Kentucky
Massachusetts
Tennessee
Arizona
Missouri
Virginia
Connecticut
Washington
Iowa
Oregon
Maryland
Arkansas
South Carolina
Georgia
West Virginia
Oklahoma
Mississippi
Maine
New Mexico
Colorado
Alabama
District of Columbia
Kansas
Utah
Nebraska
Idaho
North Dakota
Rhode Island
New Hampshire
Delaw are
Vermont
Alaska
Nevada
Montana
South Dakota
Hawaii
Wyoming
Source: Estimated
from U.S. House of
Representatives
(2016) by R. Hemp
based on State of
the States Medicaid
data
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
http://www.StateoftheStates.org/
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
www.StateoftheStates.org
1. Total Fiscal Effort for IDD Services
2. Community Fiscal Effort for IDD Services
3. Institutional (16+) Fiscal Effort for IDD Services
4. Community Spending as a Percent of Total IDD Services
5. Percent of Total Out-of-Home Placements in Settings for 6 or Fewer Persons
6. Percent of Total Statewide I/DD Caregiving Families Supported by State IDD Agencies
7. Aging IDD Caregivers as Percent of Total Persons with IDD
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 IDD Institutions
11. Average Daily Cost of Care in State-Operated 16+ Person IDD Institutions
12. Nursing Facility Residents with IDD, Per 100,000 of the State Population
13. Six-or-fewer Person Community Spending as a Percent of Total IDD Spending
14. Unmatched State Funds Potentially Available to Match Additional Federal Medicaid Funding
15. Medicaid Percent of Total IDD Spending
16. Public Spending for Family Support and Supported Living as a % of Total IDD Spending
Source: Braddock, D., Hemp, R., Tanis, E.S., et al.(2017).The State of the States in Intellectual Disabilities:2017
To learn more about the Coleman Institute visit
www.ColemanInstitute.org
For more information about State of the States visit:
http://www.StateoftheStates.org
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www.ResearchGate.net
Financial support was obtained from the U.S. Administration on
Intellectual and Developmental Disabilities and the University of
Colorado.
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Full-text available
  • Mar 2022
In this national survey of departments of developmental disabilities services across the United States, we attempted to establish the number of the states that made remote support services available as an authorized service in some state Medicaid funded developmental disabilities waiver programs. Remote support services were defined as a service that uses technology to support an individual with developmental disabilities and is provided from a location outside of the person's home. Remote support services involve the use of technology to provide real‐time assistance from a direct support professional from a remote location. We found that 18 of the 49 states (37%) that responded to our telephone survey reported offering some form of remote support services. This survey was conducted pre‐COVID‐19 and the implications of the availability of remote support services are discussed especially in light of COVID‐19.
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30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities
Book
Full-text available
  • Jun 2021
This publication was written for the general public to share changes in the lives of people with IDD in the United States between 1987 and 2017. Community living became a reality for many people in the last 30 years. Live where you want. Choose who you live with. Earn money at a job you enjoy. Eat when you want. Choose how to spend your free time. Decide how you will spend your money. These basic personal freedoms are denied to too many people with IDD. This book tells about the supports people with IDD get at home, at work and in the community. It also tells about how supports are paid for and about the technology that makes peoples lives better. Produced with the co-involvement of a national team of experts with lived experience, read their stories and their thoughts about the system in this book.
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In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends 2018
Technical Report
Full-text available
  • Dec 2021
This report describes Medicaid funded long-term supports and services (LTSS) for people with IDD in the United States as of June 30, 2018. The report describes living arrangements for people receiving supports by setting type, setting size, operation type (state or nonstate), funding type, and age. It includes an estimate of the number of people with IDD in the U.S., the number getting LTSS, and the number waiting for LTSS. These data are based on an annual survey of state IDD directors. The report also summarizes the results of an annual survey of large state-run residences. That survey focuses on the characteristics of people living in state institutions, and the staff who provide service to them. In addition to describing the results of two 2018 surveys, the report summarizes key trends in services for people with IDD including changes in the size and type of living arrangements, changes in Medicaid funded services for people with IDD. It chronicles the deinstitutionalization of residential services for people with IDD, and the Medicaid changes drove the shift from institution based care to supports provided in peoples homes and communities.
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Towards a universal cognitive tool: designing accessible visualization for people with intellectual and developmental disabilities
Article
  • Oct 2021
Data visualization leverages human visual system to enhance cognition, it helps a person quickly and accurately see the trends, outliers, and patterns in data. Yet using visualization requires a viewer to read abstract imagery, estimate statistics, and retain information. These processes typically function differently for those with Intellectual and Developmental Disabilities (IDD) and have created an inaccessible barrier for them to access data. Preliminary findings from our graphical perception experiment suggest that people with IDD use different strategies to reason with data and are more sensitive to the design of data visualization compared with non-IDD populations. This article discusses several implications from that study and lays out actionable steps towards turning data visualization into a universal cognitive tool for people with varying cognitive abilities.
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